I'm still here, but I tend to go on to the surgery forum rather than our old one. How are you getting on?
I had my nipple recon last month which went well, the lipofill was very sore and my legs were in a real state afterwards. It has helped the shape of the boob though so was worth going through it. Apart from you and me and Rattles no one seems to be on our group anymore :-(
Hope you are doing ok.
K M xx
Yes, I had 4EC and then 4 taxol first time. Second time I had a combination of carboplatin and docetaxol. Yes, I did lose my hair again. The hair loss was depressing but mainly because it was like 'here we go again' and it is such a visible sign of the treatment. I think for me, the second time was hard because I felt I knew what to expect and I just didnt know if I could do it all again. But I did! My hair grew back more quickly second time. Less curly as well.
In terms of the 'decision', I felt like I didn't have a choice once I knew it was in my lymph nodes but like you, had this sense of doubt in the treatment in case it hadn't worked the first time (I didnt know whether the tumour was a recurrence, or had been there from the first time.) Breast cancer is so unique to each person (for all the wrong reasons!) and it is about trying to work out what you feel is the right thing, but also about your quality of life and coping with the fact that nothing is certain. Like most of us, I have good days and bad.
If there is anything I can share/do to help. Please say.
Re. work - I love work in some ways, and it really helps me mentally, but it is also a huge drain on my energy. I have just been referred to 'Access to Work' so I am hoping they might be able to help me manage better. I really would urge you not to rush, or push yourself too hard, too soon. The only person who loses out is you.
Be thinking of you.
Thanks Rattles - can I ask did you get totally different drugs for your second lot of chemo? Also did you lose your hair twice as well? and did it grow back differently each time. It is awful that you are still suffering so much with the swelling and it will stop you getting back to normal too - whatever that may be! I hadn't realised you had had your ovaries removed too, you have been through far too much - it is quite unfair. I am going back to work on Monday, dreading getting up in the morning and organising myself to get out of the door in time! I am managing to drive ok but stil find reversing very hard so try to avoid it at all costs!
K M x
Hi Em and kitten-mad,
Good to hear from you both and it seems like you are both doing well. Kitten-mad, you probably don't remember but I was going through my second lot of chemo while most of the buddies were on the first. I understand your reservations and it can be a difficult decision (if there is a choice). I had chemo but that is because I had triple negative etc etc You have to do what is right for you but it can be tough when you find yourself in the realms of uncertainty so hope you are doing okay. Take it easy and try and do some nice things before rushing back to work.
I am doing okay- relative to this time last year - good, but a year on I have to say I expected to be alot better. I get very tired and then irritable. The lymphodema (both arms) is a pain and I have a balance problem probably caused by the removal of my ovaries. I think what is hard is that everyone expects so much. If only it did not feel so hard to manage to do what others assume is 'normal' it would really make life alot more fun! At the same time, I am incredibly grateful to be alive and feel I am too luck to complain!
Love to you all.
Thanks everyone, making a good recovery and being good and doing the exercises even though they are mega painful. still off work, but started driving again. Surgeon was pleased with me, and says I am healing really well, doesn't want to see until end of Jan. Oncologist is pushing for more chemo, but I really don't want more, as it feels as if everything I went through last year was for nothing since it was a recurrence. Surgeon said I could just monitor it for now. Onc took me off the Hormone tablets as well, as she said they were a waste of time. Rather confused by this. Very hard to get facts out of her and she doesn't like me questioning her. Most people must just go in and sign on the dotted line!
Hope you are all well
K M x
Em, so glad to hear your mammogram was okay. Great news.
Kitten-mad- hope you are continuing to recover from your op.
take care, Rattles xxx
Thanks Em and Rattles for your support and good wishes. Was very apprehensive yesterday when I went for my shower and saw the extent of the surgery. There is a channel between my back and front linking the blood supply, and a huge wound on my back. The boob looks a bit high up, but am assured that is normal. Also looks weird without a nipple, although they said I could have one for Christmas. Slept better the 2nd night home, making a complete nest of pillows. Also taking less of the Dihydrocodeine tablets - had to have 5 yesterday but haven't had one since midnight! So I must be making progress, I think I did too much yesterday, just a wee tidy up of the kitchen, on a certain level. But been kept under strict supervision today. Will keep you posted of my progress. Love K M xx
I have been thinking about you and hope you are as well as you can be - it is early days and you sound as though you are doing ever so well.
Sending lots of cyber support.
Em- hope all good with you.
Hi Girls - Thought I would keep you up to date. I went in for op last Wed, but because the marks on my breast had got increasingly worse they said I would have to have a Mx with the Dorsi Flap and a small implant. I only knew this 30 mins before going into surgery! I must admit to being a bit weepy but deep down I think I knew that this would happen. So a 5 hour op - with 3 surgeons, one on the back, one on the front and plastic surgeon finished it all off , doing implant and shaping. The next day felt as if I had been ran over by a bus! Home as of today though and feeling better each day. The new skin is amazing - as my daughter said - it is just as well you never had acne on your back mum! It is a perfect match, and so soft and smooth - and of course nippleless! He said I can get one for Christmas. So back next Tues for path results and next steps. So looking forward to sleeping in my own bed tonight with my V shaped pillow ;-)
I had a private room for the first 2 nights with hourly check ups and my own nurse, then a guy needed the bed so I was moved, to ............. the same room and bed that I had been in April 2012 - it was a weird feeling I can tell you! Hope everyone else is doing well. Love to all
K M xx
Hello Kitten Mad,
I know how much of a shock it is to get such news. You may have to dig deep, but will find a way to be strong through this and get through it, and everyone here will be supporting you. The op sounds daunting, our surgeons do such amazing things...
Sorry I haven't posted much on the thread, although I have tried to keep popping in to keep up with some of the news. A quick update -
In May I had my first surveillance mammo & ultrasound (on WLE scar area). The mammo was clear but U/S found suspicious area close to previous tumour - turned out to be a recurrence. What a shock. Another grade 3 triple negative lump with some surrounding DCIS less that a year on. Although only 13mm, it was and "occult" (i.e. not seen on mammo) which is quite unusual, and scary - I didnt know that could happen. CT scan showed clear elswehere - so chemo did its job last year and this breast just "unstable". Things happened quickly with a Mx and LD reocn in June. Pleased to report that all went smoothly, 10 weeks on and I have to say the result is fantastic. I also feel much stronger and positive than before the recurrence was found - amazing. I'm due back to work in Sept and this time am much more confident.
So many of us have had ups and downs - lets hope we all get more of the ups.
Love to everyone
So sorry to hear you need another op - but good that you got it checked out so quickly. I had some hypnotherapy from a local cancer charity to help me deal with chemo (I got more needle-phobic with each treatment) and it really helped - I was taught some techniques that helped me feel calmer before and during each chemo. Maybe something similar would help you prepare for the op? Sending love and hugs your way.
Haven't been onto the forum for ages whilst it's been getting sorted out, so only just catching up with everyone's news. Em - well done with the Race for Life, that's fantastic. Quick time too! I've been trying to exercise more, partly to try and keep the weight of (the Tamoxifen makes me eat for England). Yesterday my OH drove me halfway to work and I cycled the rest of the way - about 7 miles. Did the same coming home, and might try to do that once a week.
Love to everyone,
Hello Kitten Mad,
It has taken me ages to find our thread. I just wanted to send a big cyber-hug of support. I am so sorry you are facing the prospect of another operation and it is only natural it feels scarey. Sometimes I think it is harder when you know what to expect - ie first time round you know it will hurt, but this time you have the memories to overcome. Try and remember what you have already coped with. Remind yourself how strong you are, that you will get through this. If you are worried about pain, make sure you have a plan about managing it.
I am sure we can all help with practical advice a bit nearer- ie loose fitting and comfortable front opening tops etc but for now I am just sending you a big hug.
Thanks for the messages. Got my final treatment plan this week - it is only surface cells but they are going to remove ALL the skin from the affected breast (same one as before) and replace it with skin from my back. Op next month - and dreading the pain factor afterwards, if anyone has any tips on how to sleep or what to wear on the top half when in hospital I would love to hear them. Trying not to think about it too much - but having great difficulty in removing the marker pen diagram - when I see the extent of the cuts I feel quite sick.