I just had a mastectomy and lymph node clearance carried out on Wed and instead of the normal doom and gloom that we all hear I am feeling great! I was diagnosed on 23 December, started my chemo on 23 January and underwent my operation on 17 June. I still have to undergo radiotherapy which will be sometime in August. I just want to let people know that yes it isn’t fair that I got breast cancer but I feel you need to be positive and don’t let it bring you down even on the days you just want to run away, don’t let it think it’s going to beat you, you are stronger than it. I wasn’t sure how I would feel after my operation but I knew I wanted my operation and I knew I was ready for it, so to feel this good is amazing. One thing I have found on my treatments is that you are always going to have someone who is always going to be negative about everything no matter what, if you’ve had something, they’ve had it bigger, if you’ve felt something, they’ve felt it 10 times more, if you have a certain medication and they don’t they then want it, just smile and be thankful that’s what I did, I know it’s hard but it works! Good luck to everyone waiting, having chemo or recovering, you can do it!
What a great post. Fully agree regarding positivity it really helps keep you well. This was told to me by the Sister on the chemo ward 6 years ago, she said ladies with a positive attitude coped better with chemo.Recurrence dx in November and still having targeted treatment for HER2+.
Finished chemo 11 weeks ago and am having surgery on 29th June (mastectomy) and pleased to here how well you are doing.
What a great post and I wholeheartedly agree. Everyone’s experience is different, but for newbies on the forums, I think it is helpful for them to know that some of us have a reasonably good experience.
I am on my second diagnosis of DCIS. 6 years ago, it was an immense shock as I thought I had a healthy lifestyle and didn’t have any symptoms. I had 2 WLEs to clear the margins, followed by 3 weeks of radiotherapy.
This time round, there was no choice but mastectomy. I chose the DIEP procedure with an immediate reconstuction. Although I fell into a small minority (one percent apparently!) who needed a vein taken from the arm, and this made the operation much longer at 11 hours, I have made a good recovery. I have taken it really easy and listened to my body. Still having some days of tiredness, but no problems with any of my 4 scars!
Thankfully, the path and lymph node analysis was negative, so I don’t need any more treatment.
I cannot quite believe it has all happened to me. Second diagnosis was in February, I had the single Mx on 13 April. So it’s been a very quick process. I am sure various factors contribute to a good recovery - postiive attitude probably does help, though I am a glass half empty person! - and living alone might also contribute as I think it makes you get on with life. And I am sure the summer sunshine and early mornings help too.
Good luck to everyone out there and I hope your experience is similar to mine! xxx
Hi everyone, this is my first post! I had a mastectomy 3 was ago and I felt quite good for the first few days, but not so good as the numbness began to wear off. My main problem was the drips. I had two in for 5 days and one of them became dislodged and pressed on a nerve (ouchhhh)! I did feel a lot better once the drips were removed but it was 2 weeks before I was pain free - and I’m still taking nurofen and paracetamol. I think it’s great that so many of you haven’t been in a lot of pain and gave healed well. I saw my surgeon today for a follow up as I’ve had to have fluid drained from my scar periodically. The build up of fluid was causing pain and discomfort and I couldn’t wear a bra or anything against the skin below my armpit. The doc said that I don’t have to go back again for anymore fluid drainage as there was only a small amount today and anymore will be absorbed by the body. Another reason I’ve had pain and discomfort is because I had all my lymph nodes removed at the same time - prob why I had two drains… So I have a scar from under my arm across my chest and had a lot of pain under my arm as well as lots of numbness along my arm - which seemed strange at first but I’ve git used to it. I now feel fine and almost pain free 27 days after my surgery. My scar has healed well, I almost have full movement in my arm (still need to keep doing physio exercises as I have ‘cording’ in my arm). My surgeon has kept a sort of pile of skin on my scar, ready to use when I have my breast reconstructed. I start my 1st chemo session on Wed. Yesterday I had my pre chemo bloods and heart Echo and I gave booked a wig fitting session on Tuesday! Bit nervous about starting chemo but the sooner it starts the sooner it will be over! I’m having the ‘blend’ of chemo called EC every 3wks for 12 weeks and then having weekly Taxane for 12 wks. I’ve worked out that my last chemo will be on Dec 23rd! I am feeling positive so far but not sure how long it will continue! Good luck to everyone!
Hello ladies - had to share my news on this postive post.
Had a bi-lateral mx at 1.30 pm yesterday (Saturday 11 July) with full lymph node removal under one arm and sentinel under the other. No drains and pain minimal responding to paracetamol. Home at lunch time today and moving around gently and fairly wiped out by it.
I know this is the start of a tricky journey with chemo and radiotherapy to follow but I feel that I have at last started treating the diagnosis.
Sending strength and positively to everyone. (I might just be a little high with relief!)
Hi, just home from right sided mastectomy. Feel ok apart from overwhelmingly tired and nauseous. I have to say I have felt quite neglected by the medical profession since deciding on the mastectomy. I am just wandering if my experience is normal…
Had mastectomy on Thursday morning - Saw my surgeon just as the anaesthetic was put in and that was that. No visit after the op. I was in hospital for 4 days and in that time I have not seen anyone from the breast care team. Actually thats not strictly true on the Sat I asked why I hadnt seen anyone and the nurse in charge got a BCN to come and see me. She apologised and said that she did not know I was there? I saw the hospital dr on Sat and asked if I could go home - he looked at my notes and said that he was not aware that I had had a mastectomy!! and no I couldnt go home before blood tests had been done. Sunday the ward nurse took out my drain and let me go home. Other patients on my ward were there for hip replacements etc.
I have phoned the BCN and I am not expected to go back to the hospital til the 29th so no one is going to be looking at my healing process etc.
From your experience is this how the process goes? I just felt there was alittle more care and attention out there. Psychologically and physically its a hard thing to go through.
Hi marli,
Thanks for your response. Guess I’m just feeling sorry for myself. Also feeling very alone in all of this. Family are great but look so grief stricken if I let 'my happy" guard down. 5 days now since op and my right breast almost looks like it’s grown back - guessing this is the amount of fluid that is filling up in the scar. I will have to ring the bcn to have it drained out. Not due to back for results for another week but don’t think I can wait that long. Thank god for this site for all the info I’ve found on it. Hope your results were good news xx
I hope you are feeling a bit better now. It does sound like your hospital are a bit lacking in communication skills!
I had my Mx in May. I just had an overnight stay (I was told it might be possible to go home same day, but I was last on the list and didn’t get back to the ward until after 5pm - and my husband wasn’t too keen to have me back in a groggy state). I didn’t see my surgeon at all until after the op - in fact I didn’t see the anaesthetist or one of the medical team until I was waiting to go into theatre.
I didn’t have any drains but had 2 follow up appointments - one a week after the op when I saw a nurse and a physiotherapist and then my results with the surgeon and BCN where they also checked my wound (they all seemed very impressed with the result, but I couldn’t really share their enthusiasm!). Both these appointments were scheduled before the operation.
Tiredness was the main problem I had too - I had afternoon naps for a couple of weeks and I still get pretty tired if I do too much.
Hope your recovery goes smoothly - sending very gentle hugs xx
JoJo I have just been reading your first post…I am Very annoyed and angry that you did not meet your surgeon till last minute and your BC nurse…I feel you have been Very let down what part of the country are you from ?
xx
Hi Dawn,
Hope my post wasn’t misleading. I did meet my surgeon 2 weeks before the surgery. My worry/upset is the lack of aftercare I have received since the mastectomy. I haven’t seen or heard from anyone. However I have made an appointment to see bcn tomorrow to see if I need a drain. It’s been such a scary time for me. I just feel someone from the team should have been to check how I was doing. Usually I am such a chilled out person but now I’m afraid I’m turning into a moany old cow. Thanks for commenting on my post x
Jojo…I was just shocked at your lack of treatment…
I do think you should complain, for the sake if other women…
I have got a couple of best practice points also not for my surgeon she was cool…My breast care nurse, she put me in a very difficult position and I do not want anyone to go through what I did because of her negligence…
Lucky post op I have got a different BC nurse who is on the ball…But belive me when I say I am going to make sure all women are treated correctly from now on…
Complaints are quite negative, but I do think you should complain…
I hope you are ok xxxxx
Hi lafies everyone on here seems to have different experiences according to where you live. Complaining sounds easy but you don’t have the energy or inclination just after surgery. Can anyone tell me how long the tightness and pain lasts or is this different for everybody. I am 3 weeks post op and had to be drained 3 times up to now. My bc nurse is really helpful saying to ring up if I feel really uncomfortable and she will drain again but I don’t think they like to do it as it stops the healing?
Hi ladies - just wanted to share my experience so far, I agree the care we receive does differ depending on where we live (I am in Yorkshire).
I found a lump back in March, after several different types of biopsies I was infomed that I had extensive DCIS, cysts, papilloma and calcification in my right breast. I was told that the only option for me was mastectomy, which I found a struggle to come to terms with (those little white specks on the mammogram look so innocuous, it was hard to believe that there was no other treatment!).
My BCN was all over me for the first 2 weeks after diagnosis, basically wanting to know what surgery I was going to choose. I eventually decided on mx with immediate DIEP reconstruction. Since this point I have had no contact whatsoever from my BCN, I have been through SLN biopsy surgery (end of May), mx and recon (end of June), urgent drainage of abdominal seroma (last week). I wouldn’t have found it so annoying if it wasn’t for the fact that, on our first encounter when I received my diagnosis, she told me that she ‘would be with me every step of the way and we would get to know each other really well’. Why say this if it wasn’t going to happen? I didn’t want her to be my new BFF or anything (!) but just an honest explanation of what level of support was available would have been appreciated.
I am also surprised at the lack of ‘aftercare’ following surgery – I wasn’t seen by a physio, I had no advice regarding lifting/stretching, what I can/can’t do, no advice re suitable underwire (apart from to avoid underwired bras), and after one appointment at the dressings clinic I was told I would see my surgeon in 2 months time. I am feeling a little bit ‘lost’! My treatment/care is split between the Breast Unit and the Plastics Department and I’m wondering if that’s why everything seems a bit disjointed? Has anyone else experienced this?
This forum and website has been so useful as a source of information!
Hi ladies I had my masectomy on Tuesday. I was left home on Wednesday had no pain and then on Saturday it started to hurt so am now taking painkillers. Main pain in under my arm where they did snb. I am seeing the breast care nurses tomorrow so it will be interesting to see what they think. I think the thought is often scarier than the actual doing xxx
I have just read your other comments my BCN has always been contactable and I discussed things with her as well as my consultant. I have seen both since my op and a physio and already have my results appointment and my follow up op appointment. I can’t fault the support I have been given. It’s a shame some other hospitals have not been as supportive xxx
I’m sorry you had such a bad experience and I know what you mean about a production line - although my team have been supportive and I have no complaints.
It does get better - I found the 4 weeks after surgery very tough both emotionally and physically. Especially the wait for a decision on chemo (luckily I didn’t need it).I’m now 3 months on and almost back to normal (minus my left boob!).I was surprised how quickly I got used to only having one. So give yourself time and be kind to yourself.
I can also recommend Flat Friends as a great place for support and advice.
Does anyone know exactly how long you are supposed to wear the TED (anti-embolism) socks? I am getting conflicting answers. The nurse after my operation said 6 weeks (taking them off for an hour daily) but the breast care nurse said that 2 weeks should be OK if I was fairly mobile (which I have been).
Hi Bee, the teds are usually on for the time set by the particular surgeon and they all vary. I took mine off after 8 hours. If you are as mobile at 2 weeks, as you were before surgery then you don’t really need them. Also if they are poorly fitted and ruck up or cut in, then they are doing more harm than good.
Can anyone recommend websites for mastectomy bras, swimwear, and chemo headwear etc? I have already ordered some bras from Amoena.co.uk and found them really comfortable, so I can recommend them.