JUST HAD A MASTECTOMY

[jillybee]

Jojo...what I suggest,after I had bad experience on a ward,and being a staff nurse in the same hospital,may I add,is to write to PALS but bullet point the appropriate points,allowing them to answer your questions one by one.Your surgeon may have come to see you post op,but if in recovery,you may not have remembered it.I assume the anaesthetist had seen you at some time before your operation,to assess you.
Look after yourself......

[familytree]

Poor you! sounds very neglectful.. you have every right to feel like you do. I am interested to know where you are too? You need to complain (if you hve the strength or inclination!) 

I hope things improve, it's hard enough with good care!

sending love x

[jojo2]

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

[Dawn1]

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

[Ali1962]

Hi Jojo,

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

[jojo2]

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

[marli]

Jojo - I had my r/h mastectomy on 29th June, just over 3 weeks ago. I was booked in for a day surgery but elected for an overnight stay on the day ward because of a slight problem re heart due to Herceptin.

I saw my surgeon at 7.30 in the morning, had op at 8am and she came to see me at 6.30pm at evening. Staff on day ward short stay unit were fab.

Surgeon came again next morning at 8am on her way to clinic in another hospital. Was also seen by the ward nurse who checked wound and fitted me with a softee.

Came home with drain in and ward nurse came to my home to check it almost everyday until it was removed on day 7. Nurses then came every day bar 2 to check wound and remove dressings. BCN,s telephoned twice during the week. Saw surgeon again on 16th in clinic for results and on the Friday before by BCN to check on fluid retention.

So think it is fair to say that I was well looked after and that perhaps your care was lacking.

Hope you are doing well and would suggest any problems or questions you contact your named BCN as it is a long time before you see the surgeon.

Good luck.  Marli x

[jojo2]

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.

[Tweasel]

Hi Valerie. Glad to hear you are home and recovering from your surgery. Look after yourself and take it easy xx

[marli]

Hi Valerie - good to hear that your op is over and you are home. Lot of surgery you have had! Remember to take it easy and give yourself time to recover. Lots of rest.

Had my single mastectomy (had nodes removed 6 years ago) 2 weeks tomorrow and thought I was superwoman, cleaning bathroom etc. I trouble with nurses. Nerves are now starting to heal and am a bit sore now so slowing down.

Sending lots of positive and healing vibes to you.  Marli xx

[Valerie7]

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!)

V

[morrisbird]

Mags - hope the dressings are off soon and not itching too much.  Last time round I turned out to be allergic to dressings, so they didn't use them this time.  And the wounds were super-glued together!  I suppose as I stayed in hospital 5 nights, they could keep a closer eye on me.  Once the last drain was removed on day 6, I was able to come home and take it easy.  I was a bit worried about pulling it apart as I moved, but by being careful it was fine!

Now nearly 3 months on, the scars are doing really well - lots of massage with bio-oil - and the swelling has gone down.  Just a bit of tiredness if I overdo it.  But the aches and twinges do go soon enough and I was able to stop taking pain killers within a couple of weeks.

Hope everyone is doing well.

[marli]

Bazookas - hope you are continuing to make a good recovery.

Had my mastectomy 11 days ago and have just had my dressings off this morning. The scar is better than I had imagined but is still sore and a wee bit painful but nothing that a couple of paracetamol can't cure!

Drain was in 7 days in the end and was a real pain in the bum but once out such a relief.

Mags - how are you recovering (with feet up watching the tennis I seem to think).

 Hope all well. x  Marli

[Bazookas]

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!

[Mags2]

I am making the most of Wimbledon fortnight too. Got to keep my dressing on 5 days and itching already lol. I am hopeful there's no spread as there is no drain. Got to wait 2 weeks to see the consultant and can't wait to have a shower again but if that's all I've got to complain about its trivial. I had tamoxifen first time round and it still came back so I think it's hit and miss they just don't know. Keep smiling xx

[morrisbird]

Hi Mags2

Sorry for delay in replying - my life has been taken over by watching tennis - one bonus of being on sick leave at the moment.  I hope your mx went well.  I haven't taken any hormone medication either time.  I do wonder if I should have taken something after my first encounter, then it might not have come back, but the hospital were very dismissive in my case.  Isn't hindsight a wonderful thing?  Best wishes x

[marli]

Had my R/H mastectomy on Monday and all went well. Unfortunately had to come home with drain in and it is still there. District nurse hopes it will be out tomorrow so finger crossed.

No pain in wound at all although discomfort with drain.Once drain gone I will be more like me and hopefully be able to have a bath. Only needed paracetamol or ibuprofen as normal. Able to care for my self if need be cooking and washing etc. Ironing not possible at moment but not missing that. lol

I know we all have different experiences but I am so surprised at how "easy" it has been. Certainly not doom and gloom.

Hope you are keeping well Mags2.  Marli xx

[Mags2]

Just to let everyone know had my mastectomy yesterday and feeling good. Lymph nodes clear so no drain it isn't always doom and gloom having this op.

[Mags2]

Hi Morrisbird I am also on my second breast cancer diagnosis. I have my op this Thursday for mastectomy. It's good that you have positive news on this. I have decided to just have the mastectomy as the surgeon said it would be tricky to do reconstruction. Hopefully nodes will be clear. Can I ask you are you taking any hormone drugs as I am not keen on taking these again?

[morrisbird]

HiMrs 007

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

[marli]

Hi Mrs007.

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.

Keep well. Marli xx

[Mrs007]

Hi

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!