Hi,
I have recently been diagnosed with cancer in one breast and DCIS in the other. They strongly adviced double masectomy and although at the beginning it was hard enough to come to terms with the cancer news (still not doing great) I decided to go with the suggestion mainly as I don’t think I could go through it all again. They offered imidiate reconstruction and I was hoping to go for the option using my tissue. Just waiting for more scans to know if it is possible. While I am waiting I am starting to have lots of doubts and feeling very overwhelmed and scared. Has anyone on here done the tissue reconstruction and if yes, how did you find it? Did you have any regrets? They hoping to do the skin spearing reconstruction but will need to remove the nipples which is another hard issue for me to process
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.
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 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.
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.
