Hi Anna, I had DCIS 10 years ago and had a lumpectomy with radiotherapy and then routine mammogram in December picked up a new non-invasive cancer in the same breast. I had a mastectomy of my right breast with immediate skin sparing reconstruction, no lymph nodes touched and using tissue from my tummy 18 days ago and I’m doing ok.
I was surprisingly calm on the day of the op and the surgeons, theatre staff and all the nursing staff gave me the best care possible. My surgeon told me on the day he would cure me which reassured me no end. Woke up with oxygen , a catheter and three drains in and didn’t get out of bed until day 3 and then they came out on day 4 and I was discharged day 5. I was kept in a single room kept at 28 degrees with a heated blanket on for the first 24 hours to help the blood flow to the newly constructed breast. On days 2 & 3 I thought what have I done as I felt like I’d been hit by a train and I was stiff and uncomfortable but then I thought well what’s a short term pain for the long term gain. My surgeon was more than pleased with how it all went and discharged on day 5. I ended up back in A&E early hours of day 6 as I had a urine infection due to the catheter but nothing that antibiotics couldn’t sort out. Dressings were changed at the hospital breast clinic a couple of days later.
The only thing I’m struggling a bit with at the moment is some pain in my armpit and underside of my arm where they connected the blood vessels and my BCN said it might be short term nerve damage but I’m trying to work through it with pain killers and massage. I recently obtained two heart pillows designed especially for women who have had mastectomies and are free just paying postage and packaging. Search Jens Friends on the internet as I’m finding them great to support your newly constructed breast but also for emotional support too. I have a follow up appointment in 2 weeks and then I’ll find out what or any follow up treatment is needed. They’ve have said I can have a tattoo and new nipple constructed in 12 months but to be honest I’m not that bothered.
Finally, in terms of recovery it will be a slow process and my surgeon said it would be 3-4 months to get back to full mobility and 12 months to realistically getting back to full health. Finally I have the added complication of my husband having MS with poor mobility and therefore we’ve had to pull on the support of family and friends who are only too happy to help out.
My advice to you Anna is that the unknown is much more scary than what you already know. If I had to, I would make the same choice again knowing what I know. Also don’t be afraid to ask questions or to ask for help when you need it no matter how big or small.
Good luck with your operation and treatment going forward, you are strong and you’ll come through it ok.
Onwards and upwards.
Thank you for your best wishes.
My op last Monday went very well and I was discharged yesterday afternoon, surgical staff are happy with my progress and everything is healing off nicely.
I must say I did not get nervous at all, I was waiting for the last minute rush but all went well. We went for a leisurely lunch last Sunday and then my eldest helped me pack my bag, I slept ok and had some water before I had to stop taking on any more fluids. Once admitted on the morning and after family had left I saw a string of surgeons and when Anatheticist asked how I felt I could only describe it as the anticipation when you have your first child, I know it has to happen, I can’t stop the process and whether I might do it again remains to be seen after the event. I was out of bed and in the chair the next day, walked myself to the loo the day after that and am looking forward to a nice shower in my own bathroom this afternoon. It’ll probably will leave me completely exhausted but it is getting better day by day. The remaining drains were removed yesterday before I left the hospital.
The Op was a long day but you are in the hands of very experienced professionals who need their time to get the results they discussed with you, I was surprised by the number of surgical and nursing staff involved who are concentrating just on you and to be fair, you don’t want them to do a rush job or cut corners.
Our local hospital can facilitate one Diep op per week only due to the resources involved so I feel blessed that I was given the opportunity to have this procedure.
I think it was hardest for my family having to wait for the call to say I was out of surgery which they didn’t receive until early evening.
My my thoughts and best wishes are with you on your journey next week, sending you hugs and lots of positive thoughts xx
I hope your operation went well and you are recovering well xx
I managed to get my self busy and between that and not feeling well i managed not to think about what's coming. The operation is on Tuesday and the nerves are kicking in. Still didn't find decent bra but waiting for another delivery tomorrow and it better be good this time as I spent little fortune on that. They also had briefs after the operation so we shall see if it will be any good
Big hugs to all xx
Hi, I have been following your thread as I am in a similar situation as you two. I had my pre op yesterday and as it was on the ward where I’ll be staying after my single Mx and DIEP, I was lucky to meet already two members of staff who’ll be looking after me next week, I am scheduled for 25/02.
The nursing staff prepared me on what to expect re what I may feel like for the first couple of days after the Op, drains, pain management etc. I met a Breast nurse who will be with me from the plastic surgeon’s team in addition to my BCN. I was there for over an hour and must say it was very re-assuring to have had that meeting and the time to ask lots of questions. I had a fair time of waiting for it to happen from being diagnosed at the beginning of December last year, so all this yesterday brought it really home and I broke down for the first time to have a good cry.
I researched a bit whilst all this waiting and bought a post op bra from M&S, they have staff to advise you, some front opening nightwear as nurses will check the breast and tummy area often, and a V pillow as we’ll be propped up and not lying down flat to sleep for a bit. I am not certain how to keep busy for the next few days, but then I don’t want to just wish time away either. It certainly is a time of discovery and self reflection! Wishing you both good luck and sending hugs xxx
Sorry I haven't been on for a while. Thought I was coping well but I think I am not. Just trying to concentrate on what needs to be done and not think more about it but it's soooo hard. The operation itself really scares me (all 12-14hours) ☹️ in many ways I wish they tell you one day and the next day you are in the operating theatre, feel like I will have epic breakdown any time now 😢 I am sorry as I probably am not helping your mood right now but we both are going to be just fine 🙏 we just need somehow survive till the operation day. Have my pre assessment tomorrow but don't feel ready for it yet 😞 Was just looking at the post op bras as I think that's the only thing I am missing from the material staff and omg they so expensive and why can you only buy it online - really frustrates me as I like to see anything I buy first especially in this case.
Did they gave you any advice on what you need after the operation?
Hope you are as OK as you can be xxx
I am having my DIEP just four days after you. Still feels sufficiently far off to be happening to someone else, but am getting a few 3am wakeups so obviously anxiety is creeping in. Trying to get myself as tired as possible by bedtime helps a little, and started taking a low dose of Melatonin to help sleep. This is all so scary, isn't it?
So operation booked for the 5th March and turns out my vessels aren't perfect either but it won't change my chances but will add to the time they will need to operate for. Apparently arround 12-14 hours ☹️ I am okeish for now but can see myself stressing out closer to the date How did you guys manage the days.before the operation?
Thank you ladies for replying and sharing your experience with me. It means a lot and gave me more reassurance. It is so many important decisions we have to make in such a short time, it really is overwhelming. I am sorry I went quiet on here but on the top of all the appointments and tests I am not feeling well and neither are my kids so not the easiest of times.
I am meeting plastic surgeon tomorrow after having ct scan of my vessels to see if it is even possible to use my own tissue and before I read your replies I was nearly changing my mind about it. Thank you so much, I feel I am back on track with knowing what I want, let's hope they will say tomorrow that it is possible. We all have our own reasons and do what it's right for us at the time so there is no wrong or right I guess. From the moment I was told I had cancer I knew what I need to do but that doesn't mean I am ok with it and that's not easy to understand for some. I choose to have double masectomy and I know is for the best and try to prepare myself mentally for the outcome but I am worried I will break on the day of the operation. I am very relieved they offering immediate reconstruction as I honestly don't think I could cope without it. I choose own tissue reconstruction as I never been fan of implants (and by all means I am not judging anyone who used it or planning to, its just personal preference ). However the thought of having such a big operation really scared me, so once again thank you for sharing. Also not sure how I will cope with a big scar across my belly but perhaps it is not going to be as bad. No one has yet discussed with me the nipple reconstruction etc but perhaps they waiting first to see how we will do the breast reconstruction. It is important for me and I was devastated when the surgeon said he will be removing it. Maybe with time it won't bother me as much. Tried to cheer myself up looking at some breast tattoos and there is some really good designs there 😊
CDC1811 glad to hear you are finally cancer free and I hope your recovery goes smooth for you xx
Ann good luck with your operation - have you got date for it yet? hope the recovery will go smoothly for you this time round.
Delly thank you so much for your replies and staying so cheerfull 😊 I am sorry if I don't make much sens sometimes but typing it on my phone and it is not easy on the small screen scrolling constantly.
Thank you for being here for me xx
That's been a really tough long time for you, but I'm glad it's all been for the better in the end, i.e. you're now clear of the blasted bleep, and great that you're pleased with your results.
Weeannie - I've heard only very special people have wonky vessels !!!
Lots of love to you all
I had a double mastectomy with immediate DIEP reconstruction using my abdomen two weeks ago, Yes it’s a long op but I’m delighted with the results and thankfully recovering well. I have good symmetry because I had both breasts reconstructed at the same time. My stomach feels very tight at the moment but is flat and the scarring is very neat. I got my pathology results today. I’d had previous breast conserving surgery as I really wanted to keep my nipples and sensation. I went on to have a re-excision on the right which still failed to remove all the cancer on that side and I then had six months of chemo followed by my recent surgery. Today’s pathology results showed that I still had small areas of cancer in both breasts but now they’ve been removed I’m cancer free! I’m delighted! Ultimately I couldn’t keep my nipples either but this hasn’t bothered me as much as I thought it would but maybe that will change in time and I’ll consider a reconstruction, I sometimes wish I’d gone with the option of a double mastectomy at the very beginning when it was first offered after I found out I had bilateral breast cancer. However, I want to move on and have no regrets. Good luck with making your decision.
i had double DIEP recon using the fat from my abdomen in December 2015 and have never regretted my decision. My breasts look pretty good although I’m still waiting for a final op for symmetry which will be being carried out soon. I will then have nipple tattoos and think I will finally be able to move forward with my life. I have no feeling in either breast anymore, and am numb round my left underarm and upper right thigh where they took a blood vessel “for plumbing”. But knowing that 98% of my original breast tissue was gone was more important for me psychologically than loosing feeling in any part of my body. The op itself was long (16 hours) but my lovely surgeon told me that this had occurred because I have wonky blood vessels. 😳 I was also unfortunate in that I caught a post op infection so had to stay in hospital for 11 days. I was off work for about 3 months in total but did take my time going back because I’d worked all through chemo and rads and was totally knackered at the end of it!! So I learned my lesson and took my time after recon. Hope this is of some help. Best wishes with whichever treatment plan you decide is for you x x Ann x x
I didn't have self tissue recon, opted for bilat implants, which were delayed. But I'm responding more from your nipple point of view. It was the main reason, with my first breast, for my difficulty in deciding lumpectomy, save nipple, but have the need for rads and be left with something unacceptable to look at (surgeons own words), or mastectomy, lose the nipple, but have the option to have recon and nipple recon at a later date. I desperately wanted to hold on to my nipple. But ended up losing both with my decision of masts. But nipple recon would be offered. Yes, you obviously don't have the sensitivity, but with tattooing to the areolars, they look very natural.
There's such a huge amount of info for you to consider, and it can feel very overwhelming, mindboggling, exhausting even. If you haven't already, ask to look at photos of the different procedures
What are the doubts you are having, Anna? Whether abdomen or other self tissue area, or implants?
Let us know how you're doing and where you're up to with everything, will you.
Lotsa love, Delly xxxx