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vanmack
Member
since
24-04-2016
12
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19
Hugs
09-05-2022
07:56
Thank you for your kind words 🤗. I have had counselling privately, the NHS has a long waiting list and I needed help immediately which has helped massively, however the cost of £100 a session means Its not sustainable but I use all the tools I have been given through that. I'm very grateful to the team that did my surgery and I know for me an implant was not an option, this cancer roller-coaster gains momentum so quickly you don't have time to come to terms with it before you have to make hard and lasting decisions. I truly hope that medical science can find a better way to treat this horrible disease. If you need to be heard shout loud, otherwise you can get pushed through the system, advocate for your own care and if you don't feel right don't keep quiet, that said you could have the best experience ever and I truly hope you do x
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05-05-2022
06:23
Hi, yes more than happy to share how I'm doing now being as honest as I possibly can. So, although I had a successful surgery (medically) I struggled mentally. At about 7 months post op I developed muscle wall weakness in my abdomen, I felt like I had a rugby ball in my abdomen and the swelling and hardness was difficult to accept. My surgeon suggested 3 options, 1. surgery to repair, stitch the abs back together, 2. insert mesh behind the muscle or accept this as my new normal 3. lose some weight and try to tone up my abdomen. He advised that surgery only has a 50% success rate, so I have decided to try and live with it, I have lost some weight and do feel more comfortable. My breast has healed nicely and although it's smaller than my natural breast you really cannot tell in a bra. I decided against any further phases and declined the addition of a nipple, for me it's not important but I understand for others it is. Every woman who goes through this is going to have a different story, all I can say is that I have two breasts that feel like breasts, they are not perfect but they weren't before surgery, my abdominal scar looks really good, has healed smoothly and is fading nicely. The struggle I have is with accepting that I have changed, but time is a great healer, I hope you can make the right decision for you and that this helps xx
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20-08-2021
10:36
1 Hug
Hi @Sandra23, you've done the hard bit, the rest is all about recovery. I haven't had any tissue loss/necrosis but there are lots of posts around this on the American Diep Flap Recovery websites. I know this might seem disappointing and scary but it will heal its just going to take a little longer. Big hugs to you, breathe and it will all be OK xx
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12-08-2021
06:02
1 Hug
Hi @Fiveoclocksomewhere so pleased to hear another positive post re Diep Flap. I agree with you completely on doing things that keep your mind busy and stop it from wandering to negativaty avenue, for me the psychological impact had been as important to focus on as the physical, coming to terms with the loss of a breast and the surgery does make you think exactly that 'What the hell just happened to me '! I had to make a choice for surgery that I did not want but had to have, be that implant, remain flat, Diep flap etc, it's an emotional roller-coaster but we're out the other side 💪 we'll done on getting to the gym, I'm trying to stop eating my body weight in cake, it's hard 🙄 all the best with your recovery x
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12-08-2021
10:33
1 Hug
Hi @sarahn, sorry for the late reply. I don't know if you have had your surgery yet but wanted to wish you all the best. The surgeons will do their absolute best for you and you will be so well supported by the staff, they know this is a big surgery and scary for the patient so adjust their care accordingly. This is just another experience life has thrown at us one we will look back on and say isn't it amazing what they can do 😘
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12-08-2021
10:25
1 Hug
Hi @Jacaranda, sorry for the late reply, I am so grateful for the immediate reconstruction, I really didn't want to go through multiple surgeries as I have pre existing health conditions. I continue to work on my recovery and am content with the outcome aesthetically. I have been offered nipple reconstruction and dog ear correction (the pointy bits at the ends of the abdominal scar) but they are not important to me, I don't really notice them. At this point I'm not bothered about a nipple, and feel I've been through enough for the time being. That said this is a long haul flight, I have learnt the hard way what my limitations are physically and now listen to my body perhaps for the first time ever. If I can offer any advice it's look after your new body with plenty of rest, lots of lovely foods, gentle movement often until you feel more capable and know that you will get through it ❤️
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05-06-2021
03:11
1 Hug
Thankyou @Fiveoclocksomewhere so glad to hear it's been a positive experience for you. The hard bits done, I wish you all the best in your continued recovery ❤️
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02-06-2021
11:11
Hello, sorry to hear your mum is in this position, thought I would offer the same advice I was given following my diagnosis and treatment plan. I had a recurrence in the same breast and my only option was to have a masectomy as I had previously had radiotherapy. I was offered an immediate reconstruction by my consultant and told it would just be a matter of a few weeks wait and that I would be given a date, when I saw the plastic surgeon. Long story short, the plastic surgeon said he could give me the reconstruction I wanted (diep flap) as I did not want anything artificial in my body, but not immediately, I would have to wait for a few months, obviously I didn't have a few months to wait! he offered me a temporary Expander in the meantime, something I had stressed I didn't want. So my options were remain flat or accept the expander, I knew I wouldn't be happy with those. I rang the help line on this forum and they told me to speak to my GP to see if they could refer to me another hospital or speak to Patient Advisory Liasion Services at the hospital (to stress the concerns for your mum). In the end it was my breast Cancer nurse who escalated my situation to the Multi Disciplinary Team and the Clinical Lead of plastic surgery picked it up and everything changed for me. He rang me and apologised for the additional stress I had been placed under as this had been going on for a month. I was given a date and had my surgery. Don't feel you can't ask for what you want and what your mum needs, she's just as important as everyone else going through this horrendous disease. I truly hope you get this sorted, big hug to you and your mum x
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30-05-2021
07:42
Hi ladies, I wonder if anyone has experienced this post masectomy? I had a period 6 days after a single masectomy and immediate reconstruction, the loss was so strange almost like the loss (lochia) you loose after having had a baby, the colour consistency and that unique odour that only comes after giving birth. I actually felt like I had given birth. I'm wondering if it's all linked to the surgery and the hormonal loss of the breast/ reproductive organ? As if the whole breast Cancer shenanigans isn't enough, please share if you have experienced anything like this.
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You are very welcome Becky87, I know for me I would have been anxious whatever surgery I was having, yes it was a long surgery it can be done in less time but my surgeon was meticulous, no other reason for the length he just wanted the absolute best result for me. I knew nothing about it, it was more concerning for my loved ones to be honest. Initially post surgery is difficult as you have drains in both abdomen and breast but mine were removed after the 3rd day and you start to feel more comfortable, you will be well supported with appropriate pain medication and our fantastic NHS staff, i wish you all the best in your choices x
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Hi everyone, I am on day 10 post op for a right sided mastectomy, sentinal node biopsy and immediate Diep Flap reconstruction. I thought it might be helpful to share my reasons for choosing this type of surgery and my experience after surgery. I had WLE previously in the same breast in 2016 for high grade DCIS plus 15 rounds of radiotherapy, er/pr negative. On my last (5th) year surveillance mammogram a new cluster of calcifications were detected in the same site plus a new area of invasive ductal carcinoma. My only option at this point was a masectomy, I knew I did not want an implant or anything foreign in my body so for me it was either try the Diep or stay flat, I'm a young 52 year old not ready to accept that just yet. My surgery was just over 11 hrs, it went really well and medically they were really pleased with the surgery and my observations. I cannot tell you how scared I was to have such a long surgery but that's understandable, there would be something wrong if I wasnt. Emotionally I found it hard to accept the surgery and it took a long time for the anaesthetic to leave my body, honestly only started to feel the brain fog leave in the last couple of days. But, I am amazed how I have turned a corner, beyond chuffed with my new breast which started to have sensation around three days post op and now feels like part of me, because it is part of me! My mobility is getting better each day as I continue to heal and am doing my exercises as recommended. I currently only require ibuprofen and paracetamol but only when I feel I need it. I am in awe of the surgeons skill, I have a brand new belly button and a flat but still numb stomach with a surprisingly considerate scar about 1.5 inches above my pubic line running in the curve of my groin area from hip bone to hip bone. Most importantly they have cut the cancer out of my body and that's the priority, reconstruction was a choice but I'm so glad I was brave enough to go for it. Love and hugs to anyone out there who is going through this terrible disease xx
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