Hi I have just had a lumpectomy and unfortunately they found the lump was twice the size the MRI scan showed. therefore my surgeon has advised i now move to a full mastectomy. I want to have immediate reconstruction, but my surgeon is reluctant stating that radiotherapy may impact quality of it - i have undertaken my own research and understand the risks, but immediate reconstruction ( autologous) not implant is my preference, and this appears to carry less risk of being impacted by radiotherapy than an implant also.
Can any of you ladies who have had immediate reconstruction advise if you have had follow up radiotherapy and how that went?
I’m new to this forum and have just had a double mastectomy. I haven’t looked into bras yet, I was unsure about styles, plus I wondered if they would ride up if there’s nothing there?
I have secondary breast cancer, and had a very aggressive tumour in my left breast which had stopped responding to letrozol. I’m a bit concerned about the amount of fluid in my drains, instead of decreasing it’s increasing, it has only been 3 days but I was wondering has anyone else experienced this? Plus the area around one of the drains is very itchy, it’s driving me mad!
Hi stargazer 1, I had my mastectomy on 7th Dec and had an immediate reconstruction with implant. My drains are still in place as they are still draining over 50ml per day and my surgeon won’t take them out until they are below 20 for 2 days.
ive had no pain from my surgery at all, a bit of discomfort and tightness but nothing more. The drains are a nuisance but you soon learn to live with them. A drain bag is a must ( I got mine from the cancer research on line shop ). I actually purchased a gift pack of soft velvet heart shaped cushion for under my arm - a godsend - a padded cushion to protect you from the seatbelt, a plain black cord drain bag - very discreet, and an eye mask. There is a Facebook group called Jens Friends who will also send you heart shaped cushions for just the cost of the postage. These are much firmer so I use them whilst I’m sleeping to keep my armpit comfy ( who knew ).
i only take paracetamol and ibuprofen ( and now tamoxifen ) so can still enjoy an occasional glass of wine which has been nice over Xmas.
im allergic to waterproof dressings so have now gone 3 weeks having a strip down wash and washing my hair over the sink. Deep joy today they are trying silicon dressings so tomorrow I’m having my first shower. Suspect my drains won’t come out for another week. Hopefully like me you’ll be amazed how well you feel after the surgery, I stayed in one night because of the reconstruction and low bp but honestly felt I could have come home the same day.
if you have any questions don’t hesitate to ask, stay strong and keep your chin up xx Melanie
Dear Starglazer, I had a mastectomy 3years ago, with a reconstruction, left hospital with next day with two drains, was suggested I used soft sports bra for a week or so after approximately 5 days of all goes well your drains will be removed you will then be able to shower, this is a bit uncomfortable, however gets better each day. I put my drains in a little bag with a handle as suggested by BC nurses to carry around with me.
Hope all goes well for you, have lots of rest and take good care BRAVE LADY.
BIG HUGS TILI
Hi.After previously having bc 5 years ago, a lumpectomy and radiotherapy I have just found out I have another primary cancer in the same breast. I am having a mastectomy on the 2 Jan with an expander implant. I am actually coping quite well, even though i say this myself!, but i like to be prepared and cannot find any information on what I should wear immediately after the mx? I will have 2 drains fitted, what are these like? what will i be albe to wear when i am home from hospital? how will i shower with the drains? will they just hang there? Im sorry for so many questions but I need to be prepared for next week xxx
I echo what Helenann has written. Please don't feel bad. As she said, it's traumatic having any surgery. I will really hope and pray that they have got clear margins. If there had been any chance of my having a lumpectomy instead of a mastectomy then I would have jumped at the chance!
Try not to worry about the future, and also don't worry about the cost to the NHS for your treatment. We all contribute and I can assure you that I would far rather be still in the position that I was paying for other people's treatment, rather than having to go through it myself. But it is what it is, and thank goodness that we have the NHS.
Please try to enjoy Christmas and I hope you find peace.
Love Jane xx
Dear Carol- you don't 'owe' anyone an explanation. What you have been through is VERY traumatic. I'm just so pleased for you that the medical team gave you the choice to try for a lumpectomy (This is still a big operation, so don't feel 'bad' that you haven't had a mastectomy).
I'm glad we were here to give you support and help with our own experiences - it doesn't matter where you're from.
You've obviously had the added stress of all this Brexit stuff to deal with. I really hope it all works out for you and your husband.From what you say I don't consider you a 'guest' here - sounds like you both work hard and as you said pay your taxes etc - so you're just as entitled to treatment under the NHS as anyone - so don't ever feel like 'bad' about it.
Now try and put this to the back of your mind for now, have a good Christmas.
You're only young- in one way much worse for you being diagnosed at such a young age - but with youth on your side hopefully you'll be fit enough to get through any treatment you may need in the future (im 62 so a wise old head hopefully).
I'll say a prayer and light a candle for you over Christmas.
You take good care of yourself- aches and pains will subside as time goes on. Take paracetamol and ibuprofen for now. Much love, Helen😍😍😍xxx
hi Carol Lina,
It is good that you are sounding more positive. I see that you had a lumpectomy rather than mastectomy. I am glad a decision was made with no more delays!
I had my first radiotherapy this morning! I have no effects so far.
Our daughter was back from Uni on Friday, and our son came home from his internship , for the weekend, so we were all together, which made me very happy!! He comes home for the Christmas break this Thursday, so we will have a lovely Christmas, and I must say, I appreciate my family and friends even more, after my diagnosis.
Happy Christmas to you and enjoy your family reunion soon.
Love Jane xxx
Hi Carol -Thanks for posting your update - I've been thinking about you. Great that you were eventually given the choice and well done on geting through the lumpectomy surgery. Don't worry too much about any scar you might have when the dressing comes off - scars fade and you can use all sorts of nice creams and oils to help them fade quicker.
It's quite usual to feel sick after an anaesthetic, I think - I know I felt sick but it soon passes.
I think Asda do some post surgery bra's that are quite reasonably priced - might be worth a look.
When do you go back for your results? Will keep my fingers crossed for you🤞.
I'm doing really well, thanks, starting to feel like 'me' again.
Take care and do keep in touch.
Love, Helen. xxx
Thank you Carol Lina,
It sounds like you have had similar frustrations to me. I think we just have to accept that we are just one of many many people, so there are bound to be administration errors at times.
Thank you for your good wishes about my forthcoming radiotherapy. I hope you are right! It will be fifteen sessions, Monday to Friday, but due to Christmas Day, Boxing Day and New Year's Day, it will extend to 10th January.
They just phoned again yesterday and said they need another scan whilst I hold my breath ( as my breast cancer was left breast and it will protect my heart if I hold my breath during the radiotherapy. I had read up on this, but when they took the scan they told me to breathe normally, and then they said, as I was leaving, that they might call me back if the oncologist decided he wanted another scan with my breath held.). So they asked me to ' pop back' tomorrow for another scan. If it's anything like last time then that will be another four hours out of my day! I don't mind while I am off work, but that is why I have asked them if there is any chance of bringing the appointments forward as I really want to complete them before I go back to work. ( They have said it is really unlikely).
Hi Mai, Thank you for your post. You are really good at articulating the emotions regarding mastectomy, and I always find your posts very comforting.
Hi Carol Lina,
Thank you for asking! It was not too bad. Unfortunately, our new radiotherapy unit in our town has been delayed in opening, and opens five days after my last radiotherapy! So it's a forty minute drive- not as bad as some and I have lots of offers of help, though I drove myself today. There was a mix up, and I was supposed to see my oncologist first, but he doesn't work there on a Monday! So I couldn't ask all the questions that I had for him.
There were four people in the room, including a young female student and a young man who seemed to be pottering about in the corner! I felt a bit vulnerable and exposed, as only the surgeon and my breast care nurse have seen my scar, and then here I was, lying with my arms up above my head, having measurements taken, and the tattoos placed. You certainly have to surrender your dignity, but I keep telling myself that they see this all the time.
I am anxious to get on with the next stage, but I feel so well in myself now that I hope it doesn't make me feel too tired, especially as I go back to work on 2nd January ( but mornings only until radiotherapy finishes on 10th January)
Janie123, you are doing really well and the fact that you are able to discuss your mastectomy is part of the healing process. I stuck my head in the sand for a whole year! I like your image of me galloping off into the distance. I think that's exactly what are afraid of, metaphorically, after cancer. We are afraid to move towards a positive horizon and risk stagnating our existence because of it. With the equine therapy you just interact with the horse but don't ride it so its also suitable for non-riders. I had a horse in my youth so it's possibly a place I would seek comfort as it has happy associations for me in the past. I'm sure you'll be able to get back into running soon. I've been running a few times since finishing treatment but prefer to just do a couple of miles nowadays as I don't want to drain my immune system. xx
Thanks for your good wishes and I hope you have a wonderful Christmas with your family too. I have always been grateful for my lovely family and wide circle of friends, but goodness, these past seven months have made me appreciate them even more!
I love the imagery of you on a horse, galloping throught the countryside, with a counsellor galloping alongside!
I always used to find running a fabulous release. Headphones on, wind in my hair, and alone with my thoughts. I have a radiotherapy planning appointment today, and I shall ask if I can start running again. It is almost five weeks, post-mastectomy.
Carol Lina, I think it would be a good idea for you to chat with the nurses on here to help you get a bit more clarity on what is happening. xx
Janie, the best counselling I've received has been equine therapy. It was great to be in the countryside with a horse and I had to shout for the counsellor to hear me. That kind of forces the emotion out of you in a strange way. I hadn't been able to talk about my surgery until recently. I just couldnt even begin to put it into words before. I'm sure I'll get there in the end with the decision. My kids too will be home from Uni soon. Glad to have been here for you and I hope you have a fabulous Christmas with your family. xx
Thank you for posting. I think you are right- I do feel that my trauma has been trivialised. I also feel that I have, on the whole, worked through my emotions by talking with family, friends and ladies on this forum, so I don't feel that I need counselling now, but I needed it at the time. I still have had no follow up to the survey that they sent to me, when I indicated that I was very traumatised by the mastectomy.
I wish you luck with coming to the right decision. Thank you for the pertinent points you make. I, too,am very grateful to be alive, and I am enjoying life too. So looking forward to Christmas- children home from Uni and the house will be full- that's when I am happiest!!
pastamissus, I can keep my mind distracted very well intellectually but I can't sugar coat what I've been through. I think I was very detached about it early on after surgery but less so after a year. I'm pleased that you are able to feel unemotional about it. I'm caught in the middle of making some big decisions at present and it can be a bit overwhelming at times.
I went straight for a mastectomy rather than a WLE, as my aunt has had breast cancer 4 times, and I was worried about needing further operations if the margins weren't clear with a WLE.
I think I am very odd, it didn't bother me at all losing my breasts (got it in the other one, so had second mastectomy 6 weeks later). I live in my head rather than in my body, and am a doctor, so I really didn't feel any emotions about it at all, it was just necessary.
I also didn't want any kind of reconstruction. I now have prosthetics, but am happy flat. For anyone who is also flat (even if temporarily) there is a group called flatfriends which is really good.
Carol Lina, do you have your full diagnosis? Have they given you scan results? Are they asking you to decide on mastectomy or lumpectomy? If the decision is yours its usually because you are borderline. Mine was a clean cut decision based on having an invasive and diffuse tumour. Will you be going onto endocrine therapy (Tamoxifen or Letrazole) afterwards or are you TNBC? xxx
Janie123, it is a tough call: caught between being grateful to be alive and traumatised by events. When I was told I'd need an mx I said to the nurse "well there's not point in a well conserved breast on a dead body" which I still believe is true. A satisfactory reconstruction is more about sanity than vanity so yes, the emphasis on mental wellbeing should be considered but not hurried at the expense of a better outcome from waiting a bit. Maybe, not being offered proper counselling means your trauma somehow feels trivialised and you are left to muddle along? Just another perspective to consider. I'm a year post-mx now and my mx has only affected how I feel about myself. I keep it covered up all of the time (except in the bath/shower) so I dont have to think about it because I feel that it's a reminder of cancer for me. I should develop an attitude like the "Monty Python - just a flesh wound" scene! I have an appointment over the Xmas period for a second discussion on reconstruction. I don't have any belly fat so a DIEP flap isn't an option. The other complication is that I had symptoms of inflammatory breast cancer and an implant isn't usually an option after that ....... but I'm grateful to be alive and enjoying life, oh yes I am. xxx
You are welcome Daisydi. I have had such amazing support from this forum too. Couldn't do it without all these lovely ladies. I have been following your experiences and I really feel for you. I hope you get the answers you need, on Tuesday. Jane x
Now I understand why they have said that if not clear margins of DCIS this time then they will have to do a mastectomy. I didnt realise DCIS didnt respond to chemo. Thank god for this forum and thank you Janie for explaining. I am really hoping for positive results on Tuesday as I dont think I can take any more surgery
Hi Carol LIna,
I only had one surgery ( the mastectomy). The DCIS is not classed as cancer ( it is pre-cancer) with the potential to become invasive. There are three grades, depending how close they are to normally dividing cells. I had some high grade DCIS, and some low and intermediate grades ( so all three grades). There was 8-9cm of DCIS of these three grades, and the 4cm of high grade became my invasive tumour ( which was resolved with chemo). So I had the mastectomy because,, although all my invasive tumour was gone, the DCIS ( which my bcn called pre-cancer cells), is not treated by chemo- it can only be removed surgically, and as my DCIS was so big in relation to the size of my breast, they had to do a mastectomy. I am still having radiotherapy because tumours of 4-5cm have a slightly higher chance of recurrence, so the radiotherapy will hopefully prevent this.
Maybe some of the above may apply to you, and may be why they are recommending a mastectomy?
Love Jane xxx