HG-DCIS with two areas of invasive cancer Grade2/3 On a waiting list for DIEP/delayed reconstruction

Hi Amber, welcome. I’m sure you’ll be able to get good support here. I’m glad that you’ve had such brilliant support because I really think it helps your recovery. 90 weeks for a diep!!!! That’s really dreadful. I think all of us want to move forward as fast as we can and put it behind us as best as we can and that’s some wait. I had my diep at the same time as my mastectomy as I couldn’t have radiotherapy (second occurrence, same breast, see profile) but I’m still waiting for my nipple reconstruction and a small tummy repair, I’ve opted for a local anaesthetic rather than general as the wait will be less because it’s simple surgery but that’s not an option for you! Good luck with your appointment and happy to answer any questions you have about the diep x

Hi Anna and thank you so much for the warm welcome! I hope you get your appointment come through soon to get your nipple and small tummy repair done as soon as. The wait is a little frustrating but then I suppose it just the way the NHS is going at the moment. 

I have a long wait for my opp but at the moment there is just so much going on and I just want it over and done. 

How was your recovery?

I had a single mastectomy and will be having a right breast reduction at the same time. 

My appointment was to let me know that the angiogram was good and all the blood vessels are in the right place. The consultant said I still have a 7/12mths wait as I am not on the top of the list for the procedure. 

In the meantime I'm thinking of getting myself fitter for the op and try to loose some weight as I am only 5ft 3 and weigh 10st 11. 

Thank you again for connecting with me and I will definitely reach out with any questions. xx 

Yes the wait for ‘non essential’ surgery is really bad atm. They told me 12/18 months for my nipple, etc if I went general anaesthetic and 3/4 if I opted for the local but it’s beyond that now and when I called they just apologised and said they were snowed under. In a way I count myself lucky that I couldn’t have radiotherapy again because it meant that I could have the immediate reconstruction, they warned me if I didn’t take it then it could be a long time otherwise so it was an easy decision for me. I really feel for you ladies that have these long waits, like you say, you just want to get it over and done with. The diep is a big operation and I had the axillary sweep and the same time so it felt like I hurt everywhere! I found the first 2 weeks tough but I could move about the house, make a cuppa, light food, etc. and I relied on painkillers, OTC ones in the day and something stronger at night. But gradually you do feel better quite quickly, the 12 week recovery is an honest timescale but to put that in context I was walking my own dog and running my house myself after 2/3 weeks, albeit with regular rest, could drive within 4 weeks I think, funny how you forget fast. I have a very active job in a school and I went back to work 12 weeks after and I was good for that. I’m glad I didn’t head back earlier but if I’d have had an office job I reckon I might have been ok on a phased recovery a little earlier. If you can I’d say take 12 weeks, you won’t regret that. I’m happy to answer any questions you have, if you prefer to talk privately then send me a friend request. It was daunting but now I’m a year past the op, astoundingly, I genuinely have no regrets. I’m pleased your appointment went well, always a good start! X

Thank you so much for your lovely reply sharing your deip  journey. I also work in a school as a TA and like you I have a demanding role but mentally and physically. I am excited about having the DEIP done as I've heard some positive stories and I think it will help me personally and feel more confident about myself. 

I'm facing a huge problem at the moment and that is weight gain. I can't blame anyone or anything as I know it's me. I'm constantly feeling hungry and want to eat the wrong foods. Like I'm craving salt and savoury foods/snacks. I have tried so many times to do intermittent fasting but I just can't seem to stick to anything long term. I have a lot going on at home with both my in-laws not being well and then I have to do all the house chores, cooking, cleaning shopping, being a mum and a wife (I know I'm not alone) and I think it could be I'm burying my head eating comfort food. I just don't know what to do and how to have the mind set to be healthier and loose some weight. I know no magic wand can help and I need to do this for myself but I don't have the motivation at all. I know I'm stronger then this but I've allowed myself to fail and not look after myself. Even after a bog scare like the big C i can't get motivated to do anything about it!

I would love to  talk to talk to you and send you a friend request. I 'm so grateful for your help and reassurance. I know things will eventually fall into place but in the meantime if I could take control of my weight that would be a big step towards getting fitter and healthier for the DEIP surgery. 

Looking forward to hearing from you soon and love to all xx

I just wanted to add that I'm getting pins and needles in my hands especially when I wake up first thing or in the middle of the night. I have an alarm on my phone and its hard to hold my phone and both my hands are knub. Is this normal and do you think I should get this checked? 

I'm on tamoxifen and not sure if this is a side effect. I know my kegs ache and i have some muscle pain but the tingling in the hands can happen at anytime of the day and well as over night and more so first thing in the morning. 

Thanks 

Hi Onco11, I too at the moment have found I want to eat all the wrong foods and seem to be hungry. All my life I have found it difficult to eat the right foods. I was told that hunger can be because if not drinking enough water to keep hydrated. I now try and keep a bottle with me at all times and it does help. Maybe there are some favourites you could nibble on. Carrots and a dip, apple and peanut butter, salads I know can be boring but maybe adding a bit of salad to some cold chicken and croutons. Adding plenty of veg to a main meal too. I found I don’t cut out my favourite things like sweets or crisps but instead I make sure if I want them I have something healthy too like and apple or orange. I hope some of these ideas help a little. I know too it’s also difficult if you have children as it is tempting when letting them have a treat to have one too. I have 2 boys and they seem to constantly graze which them tempts me too. Wishing you all the best for your DEIP surgery. 
The pins and needles is worth checking out with your GP or oncologist. I’m not sure if it is a side effect of the tamoxifen but they maybe able to give something to help. I know a chemo side effect is similar and they say to make sure to mention it to your medical team so it’s worth having a chat with them. I start Tamoxifen when I finish my chemo and radiotherapy. Keep us posted as to how you get on.

Wishing you all the best.

Hugs from cuffcake x x x x x

Thank you so much Cuffcake, I appreciate your advice and will def take your advice on board. I'm waiting for my mind set to kick in and then I know I'm on the rd to success but at the moment I just can't control my binge eating. 

It’s so hard the more you try the harder it is! When you’re ready send me a friend request x

So sorry to sound so thick but how do I send you a friend request?

 Not thick! Took me ages to get to grips with this site!! I’ve just sent you one, you click on my name/profile and there’s a plus button, click on that and it’ll give you the option, you should have my request to you now x