DCIS & DIEP

[Haven2255]

I have intermediate DCIS but as had a lumpectomy with radiation 18 years ago in same breast am heading for huge op this time. I am nearly 63 and have spent the last 6 months doing my best to avoid this! There are no good options it seems.

[Nicholjac]

Hi there

You can do this , take each step at a time and don't put too many targets on yourself to achieve, you will get there , I am sure you have good support and they will be there for you and get you through it

Stay strong

[Haven2255 in reply to Nicholjac]

Thank you . Supposed to have DIEP reconstruction at same time as mastectomy, don’t like idea of huge cut and scar on tummy.

[Nicholjac in reply to Haven2255]

I know someone whose just had this and she and all her family thing she looks amazing and flat tummy

I also know a couple who had years ago and they did brilliantly , it is a big thing and scary but try not to worry what it might be like just focus on each day of when you recover each day will get better and easier

[Dmhaynes in reply to Haven2255]

I had a delayed DIEP reconstruction in march and I must say I'm really pleased with the results - I have a flat stomach for the first time in years and pretty much equal boobs!

I'm not going to deny it is a big op and not for everyone. The abdominal scar is big but is in a place where it's easily hidden. I'm now waiting for my new nipple and a bit of liposuction to fill my new breast a little more!

Talk to your breast care nurse and surgeon and ask to look at some photos of previous patients.

It's a lot to take in and I wish you luck with whatever you decide

Dx

[Haven2255 in reply to Dmhaynes]

Thx for reply. I am at the Marsden in London and they seem in too much of a hurry to really talk things through. I did ask for photos, initially denied and then shown some of women who looked nothing like me. How sore was your abdominal scar? Did it heal oK? I still have problems with scar from lumpectomy 18 years ago. This experience feels a little like post traumatic stress from then, brings it all back. I had two years of frozen shoulders and lymphedema and three years of infections whilst on tamoxifen. I also have psoriasis which tends to go to scars. Then I had lobular unvasive grade 2 , with two young children I just got on with it. Now I am 63 and have intermediate DCIS. So less urgent and in some ways more difficult to contemplate. Thx again for posting.

[Dmhaynes in reply to Haven2255]

It was a bit sore and there was a bit that took a while to heal. The stomach is quite numb for a while and even now 6 months later it has not completely returned to normal.

It is a big op and if you're unsure you don't have to have the op at the same time as the mastectomy. Ask to have more time to think.

Sorry I can't be more helpful x

[Debs1962 in reply to Haven2255]

Hi I didn't want big op either with extra scars etc on tummy, so I had an implant in 2015 and I am really happy with it, I was out the same day and have had no problems with it, i really forget I have it to be honest.

[Haven2255 in reply to Debs1962]

Thx for reply. Sadly I can’t have implant as had radiation before 18 years ago. Glad all went well.

Cassia

[Debs1962 in reply to Haven2255]

Oh I see, didn't realise radiotherapy did that, I opted to have mastectomy with implant instead of lumpectomy with radiotherapy, as just felt I wanted the lot out, in hindsight I am glad I did as I have heard some things about radiotherapy side effects, such as increase risk of lymphdema in the arm, tiredness months after etc, it is all a lottery really.

Good luck with your treatment, my hubby cousin had the op you are having, and I have to say it looked amazing.

Deb x

[Hidden]

I am so sorry about your new diagnosis. What an awful, anxious time this must be for you.

Have others spoil you through your long recovery. Be a queen.

((Hugs))

[aangus75]

I am currently recovering from Diep reconstruction and I have to say - it's been quite difficult. I am 42 and otherwise very fit and healthy (apart from the breast cancer of course!) I woke in hospital with 2 drains in my tummy and one in my breast. I spent 4 nights in hospital, which was the minimum and seemed to be recovering remarkably well. Then I developed an infected seroma in my tummy wound and am on 2 types of antibiotics and am going for my 4th wound drainage today. I'm only 2 and a half weeks post surgery but it has not been easy You have to be prepared for a long recovery from this surgery and there is a part of me that wishes I'd had an implant - or no reconstruction and just worn a prosthetic bra. I know this is just MY experience and I have spoken with many women who had easy recoveries and are very happy with the result of their Diep surgeries. I think there is a lot of emphasis on reconstruction and trying to make our bodies look like they did before the surgery. This is crucially important to some women and it's worth exploring whether this is something that is essential for you to feel better afterwards. I had small breasts to begin with and not much tummy fat - so I'm thinking it would have been a lot easier to have been left with a scar on my chest. I feel like the rest of me has been altered (mentally and emotionally) so why not my body? These are just my thoughts - I wish you all the best and I know the team at the Marsden are fantastic so you are in good hands.

[Haven2255 in reply to aangus75]

Such a good comment. I have thought about just a mastectomy also. My daughter has encouraged this. I think there is a lot to be said about our relationship to our bodies and how we might change that along with other changes we go through in life. Women in particular have to adapt to so many different personas. I have asked myself why I want a breast replaced, especially as my breasts are small and I am not young. I think if I could have some definition as well as a nipple of sorts I could manage aesthetically. My surgeon discussed a further lumpectomy which would mean almost no breast at all and having to reduce the other to match. I was prepared to contemplate this. Finally rejected it on oncological grounds as meant monitoring the breast still for cancer. Though of course even a mastectomy leaves some breast tissue, so still some uncertainty.

Cassia

[KPKaren]

Hi, I had a left sided mastectomy and DIEP reconstruction two months ago, following a routine mammogramme back in May. I hadn't even found a lump, so to be diagnosed with breast cancer was a huge shock. My consultant initially said I would have a lumpectomy, but then they did an MRI scan and found a second tumour also in my left breast, so recommended a mastectomy and I was offered the DIEP reconstruction at the same time. I feel that I was lucky, in that I have a friend who had this same surgery a few years ago and she has done brilliantly, so I had someone to talk to about it, who really understood. I didn't hesitate, reckless perhaps! But, I couldn't imagine waking up from the mastectomy without a left breast. I was also unsure that I would go back for the reconstruction later, which I felt i would then regret.

I will not pretend it has been an easy 8 weeks. Even now, there are some days that I feel incredibly tired and I've been signed off work until the end of November. I have a couple of areas on my tummy and breast wounds that are still not completely healed and I'm going back to Charring Cross every week for dressing changes. I know that other women have healed much quicker. But, I can honestly say that I do not regret having this operation for one minute. I am very happy with my left breast reconstruction, even though it is not properly healed and my tummy is definitely flatter than it has been for a long time. This is the bonus they all talk about.

I feel it was the right choice for me and of course, everyone is different. If you do go with it, be prepared for a long recovery and be gentle with yourself. I am under the breast and plastic surgery teams at the West Middlesex and Charring Cross hospitals and I cannot praise their care highly enough. I saw some photos of previous patients before my operation and it really helped me to feel more confident about this surgery. Ask again; your consultant should have some pictures that you can see.

Best of luck with everything. Stay positive and strong.

[Haven2255]

Thank you for posting

[Haven2255]

Thank you for posting . Sounds like a tough time for you . I have other friends who have had a difficult time with this. Not An easy decision to make. Sending good wishes.

[Haven2255]

Thx

Yes radiotherapy is debilitating and the effects last a while . Seems the medical profession are RE thinking it’s use

especially in cases of DCIS. Even some research indicates it is a risk factor for DCIS ,whether correlation or contributes to, not clear

Cassia

[Hidden]

I had a mastectomy with immediate DIEP 5 yesrs ago at 58. Yes the scar goes from one side of your body to the other but mine is below my bikini line. A friend says its a lot better than her cesarean scar and the flat tummy is s bonus. Whilst trying a bikini I mentioned to the young assistant I needed bottoms to cover my scar and she said why! I had to walk bent over at first but hardly had any pain. I was driving in 4 weeks (probably not supposed to).I live alone and managed fine just listen to your body. If you over do it one day just take it easy the next. Wear your scars with pride its part of you. At the end of it you have a living breast. Good luck

[Haven2255]

What an extraordinary reply, thank you. The first positive thing I have read about all this in months. I am quite small and slim though have had two children so am also a bit saggy especially being in my 60’s. but I love to move and dancing is my greatest joy. I went through considerable pain 18 years ago with a previous surgery for cancer and this is all now rushing back. I am pretty much alone and am still self employed. Things were going rather well until this diagnosis. I think it would all be easier if one knew that it was absolutely necessary. A few years ago and DCIS was cancer. Now they know it is more complex, only some DCIS will develop into an invasive cancer in a lifetime of an older woman, so now surgery is more of a safeguard than a remedy. I was given the option of monitoring the DCIS. The problem is that if one is waiting until there are signs of invasive cancer, then one is looking at chemo as well as surgery.

I am also bothered that almost every surgeon I meet is male and often tall. I can’t help feeling that all this is happening ‘to’ me as opposed to being a willing participant. Having a diagnosis of invasive cancer last time made surgery and what followed somehow easier to face. Though I do remember thinking it was not a good idea to take all 20 lymph nodes away, and now of course either does the medical profession.

Cassia Fr

[Hidden in reply to Haven2255]

I understand how you feel about a preventative mastectomy but can't imagine how bad it must feel o have I again. My cancer was discovered on a routine mammogram there was no lump and I couldn't or wouldn't believe anyone. I had 2 lumpectomys but they still couldn't get a clear margin In addition to lobular and DCIS i had pleomorphic cancer which they knew little about but there was a chance it could become invasive. They recommended a mastectomy I refused to have the operation. I couldn't come to terms with what I thought i would look like ,stupid i know. I saw sense when my boss said one of the girls said she couldn't understand why i was bothered about it she d have hers cut off straight away! It was realising how much everyone cared that gave me strength to go through with the operation. I'm sure that's what your children hope you'll do Later I had the remaining breast reduced & lifted. Finally a nipple created. If I'd known the result was so good I wouldn't have been so reluctant. I have heard others say they feel they are rushed through.

[Haven2255 in reply to Hidden]

Thank you for this Kathryn. Did you have a reconstruction after your mastectomy then? DIEP?

Where was this?

Yes, difficult second time round because all the memories come flooding back. Cassia

[Haven2255 in reply to Hidden]

Sorry Kathryn, of course you had the DIEP! Lost track of the string of emails😏

[Hidden in reply to Haven2255]

Don't worry about it. I hate technology. Yes I had immediate reconstruction and didn't need chemo as like yours it was preventative. It does seem a drastic method of prevention but well worth it. Any questions just ask. I'm in Leeds the hospital had a fantastic breast care unit.

[Haven2255 in reply to Hidden]

Thanks so much. I am at the Marsden, good reputation but seems so busy. Everyone looks tired and the internal systems are a muddle, maybe just the characteristics of a large hospital with complex cases to juggle. . I think I possibly needed counselling but no one suggested it and I didn’t think to ask as was fine while I was busy with work. When I stopped work about a week ago I rather fell apart. I think this must be quite common, 😏

[Hidden in reply to Haven2255]

You can have counseling at breast cancer Haven. Is there one near you?

[Haven2255 in reply to Hidden]

Thank you yes, but really needed it before now, as DIEP op planned for tomorrow and I am totally psychologically unprepared. My own doing, as did not realise I was falling apart until a week ago when I stopped work

[Hidden in reply to Haven2255]

I don't think you would ever be prepared. I had to go in the day before. I never slept and felt like running away. Talk to the staff I'm sure they'll understand and there will be others on the ward who feel just like you

[KPKaren in reply to Haven2255]

i hope that your op today goes well. The staff on the ward at Charring Cross were fantastic and i am sure they will be at the Marsden, too. Think of all the people, family and friends, who care about you and want to see you well again. They will be there for you when you wake up. Please let us know how you get on. Sending positive thoughts xx

[Hidden]

Hope all goes well. Thinking about you xx

[Linnb23]

Hope all has gone well for you

[Haven2255]

Thank you . Two days post op.not easy but getting there .

[Petergirl2]

Hang in there, you can do it! At least You have prior knowledge of how to take care of yourself.

[Haven2255]

thank you

[Hidden]

Sorry not been on for a while but been thinking about you. Hope all is going well xx

[Haven2255]

Day 12 post DIEP. Now home. Whilst first few days were gruelling, a big physical ordeal, it is amazing how quickly the body regenerates and one notices progress every day. Today I almost walked around the block, slowly. Sleeping a good deal in the day, not so much at night when I feel the most uncomfortable ( used to sleeping on my tummy). Have reduced pain killers to 6 paracetamol a day and sometimes one emergency tramadol in the night ...but extending period between each day. Mainly backache and soreness ...I am lucky to have a husband at home through this. He has found his role now, all he has to do is feed me three meals a day and make lots of cups of tea! They found high grade DCIS , so I think this surgery in the end was the only option. Hopefully in the not too distant future there will be others. Thank you to everyone for the support. I hope I can return it. Happy to answer questions. I had time to prepare for this operation and can tell you what I found useful.

[Haven2255 in reply to Haven2255]

Especial thank you to Kathrynnf, your posts really made a difference

[Hidden in reply to Haven2255]

Aww thank you. You've made me feel so good. I'm pleased you think it was worth it. I'm sure your family are relieved you had the operation.

[Haven2255 in reply to Hidden]

I dont suppose you remember at what point everything stops hurting?

[Hidden]

Sorry I can't remember but I know I was tired for a long time. Used to sleep a couple of hours on an afternoon. I used to walk bent over. Were all different I'm sure one day you'll realise the pain had disappeared. Xx

[Haven2255]

Thx. They have now found micro invasion and suggesting oestrogen blockers. I did not do well on this treatment before. Beginning to wonder if I should have just had a double mastectomy. I can see aesthetic and medical benefits to this approach but I was guided against it.

[Hidden]

Hi. I've not been in here for ages. Hope you are progressing nicely. I had to have an oestrogen blocker aromasin. Apart from hot flushes it wasn't too bad. I had citalopram and that helped calm them. I know what you mean about a double mastectomy although I wouldn't have considered it back then. Hope you have a good Christmas xx

[Haven2255]

Thanks for your post. I see the oncologist in a weeks time. Main problem now, nearly 9 weeks post op, are painful hard lumps around breast. Nurse says to massage, which is not pleasant. Surgeon says I can go to a pain clinic, but honestly can’t see what they can do.

I spent Christmas with my small family and some friends realising of course how fortunate I am to be in this position. ( though I did have to go to an eye hospital as an urgent case with a suspected detached retina as well as an emergency dentist with a broken molar. The latter happened last year too! ) I hope everyone reading this had some comfort over Christmas, at least enough to give them renewed strength to continue with whatever treatments they are involved in .

Wishing everyone a happy and healthy new year.

[Haven2255]

Apparently eleven weeks post op I have fat necrosis in reconstructed breast. Am told to wait 18 months to see if my body can deal with it. Given anaesthetic plasters to deal with pain, told not to massage until pain has subsided and referred to pain specialist. Does anyone have any experience of this? I did not have radiotherapy nor do I have large breasts. The reconstruction is on a site of a previous lumpectomy with all lymph nodes removed.