Mixed results following WLE

[Coralie Stephney]

Hiya im coming oming out of hospital today. 4 days after operation. Im really pleased wirh the results and got to say St Thomas hospital is amazing. The plastics team arw brilliant and the carw here has been fantastic. Im loving my new boob and flat tummy.lol. well worth all the pain which was maintained well with all the different pain relief. Im a little sore today but not as bad as i thought.

[Coralie Stephney]

Hiya well ive had the DIEP RECONSTRUCTION at St Thomas and they are brilliant. It was done Tuesday and by Wednesday they had me out of bed sitting on the chair. Yesterday i couldn't get in and out of bed without help, but today i am managing very well. Im so pleased the cancer gone and very happy with my new booby and sore but flat stomach. Long was to go but they are pleased with me so far.x

[Coralie Stephney]

Thankyou Princess for replying. That's what im worried about with infections with implant over length of recovery with DIEP.

[4princesses]

Sorry you didn't get the results you hoped for. My mastectomy was my 4th op in 4 months, so I understand how gutting it feels.

I went for the simplest reconstruction with implant as I just wanted the easiest recovery, that didn't work out as 5 weeks later I had an infection and needed a 5th operation to have the implant exchanged! All is well now though and I'm happy with how everything looks. I still have no nipple and am yet to decide what to go about it! Xxx

[Coralie Stephney]

Hi everyone.  I got my results yesterday. I wanted to see my consultant  who did the operation, Petrious, and asked for him. There for couple of hours so asked where  I was on the list. Suddenly  the nurse comes out and asks if it was possible  to see another consultant as Petrious  didn't have access to the masectomy  list?????so  I figured  I'm gonna get the dreaded news about masectomy.  I went in for the operation thinking I needed 2 clear margins as east  and west  were supposed  to be clear but the results were that Low DCIS and some intermediate  DCIS has been found. I'm gutted because my scar is so neat, shape fine and I've completely  healed. I'm being refered to St Thomas now as they have plastic surgeons for microsurgery for reconstruction. I feel a  bit negative having to have gone through 3 operation so to still resuly in a masectomy. My gut in sting was a masectomy. I'd like to hear from everyone who has had a reconstruction  and find out about their experiences thanks x

[Coralie Stephney]

Oh i understand now. Well tomorrow is D day so will hace to decide from therex

[4princesses]

It's a potential problem where scar tissue forms around the implant and can distort the shape xx

[Coralie Stephney]

Thankyou for replying. Whats capsular contractyre? Thats good if its indefinet. Glad your recovery was so quickx

[4princesses]

Please don't apologise about the questions! I have a silicone implant, it's not a smooth one so there is less likelihood of capsular contracture. I think they last I definitely now, only needing exchange if there is a problem.

I found the recovery easy, too easy on times as thee is then the tendency to do too much! My husband took 2 weeks off work, after that I was able to do the school run (we walk though not drive). I didn't drive for around 8 weeks but this is because it was my left side and I didn't feel happy changing gears!

[Coralie Stephney]

Thankyou for replying Princess. How long did it take for you to recover and get on normaly? How long will your implant last? And what time of implant did you use? Sorry for all questions but on 9th i may have to make this desision.big hugs

[4princesses]

I had a simple reconstruction using an implant which was attached under the chest muscle. The op went well and I felt really good quickly. However, I did develop an infection 5 weeks later. I needed to have the implant exchanged, but since then all has been well xxxx

[Coralie Stephney]

Hi princesses  can i ask, what sort of reconstruction  did you have and did you have any complications?  I feel I've got to have a plan b incase Monday  results are not clear. I've a friend whose had the  muscle from the back pulled through 10 years ago and if hearing about DIEP. Wonder about all the options. I'm at guys. Hope things going well for you nowx

[Coralie Stephney]

Hi princesses  what sort of reconstruction  did you have and did you have any complications?  I feel I've got to have a plan b incase Monday  results are not clear. I've a friend whose had the  muscle from the back pulled through 10 years ago and if hearing about DIEP. Wonder about all the options. I'm at guys. Hope things going well for you nowx

[Coralie Stephney]

Hiya yes I'm waiting for results after cavity shave and can't  sleep like last time. The worry is recovery  time whether it's radiotherapy  or masectomy  due to my son  who is very dependent  on me. How are you feeling  from the completion  of radiotherapy.  My results are Monday. .

[4princesses]

Hi, I do think post often but regularly read! I needed a mastectomy for mainly intermediate dcis as clear margins weren't achieved. On pathology, the dcis was widespread over 10cm so mastectomy was definitely the correct treatment for me. I was able to have immediate reconstruction which I think helped me psychologically.

If you require or decide to have a mastectomy, although it sounds frightening, it really isn't as bad as I expected. I'm 6 months the on from my op now and doing most things I did before.

Good luck xxxx

[Ali49]

That's good news Coralie. It is so much easier when you have confidence in your surgeon. Hope you're son was ok. I am a teacher in a school for young people with h8gh end Autism so I appreciate how this must be adding to your stress. Let's hope the cavity shave does the trick for you. Let me know how you get on xc

[Coralie Stephney]

Yes I was so positively as it was low grade DCIS with no invasive cancer but it was the sledge hammer delivery that upset me. I was there from 11 till 2.38 and by then was stressed over my autistic son coming home from school and me not being there. I called nurse and consultant this morning who called me back and explained better. And apologised for not looking at wound ect. Any way my consultant is going do the operation now so I'm more reassured of the cavity shave.

[Ali49]

Well up to now and I honestly felt just like you when they said I needed the 2nd op! But the positive for you, like me, is that it is all DCIS. To make the choice between cavity shave or mastectomy though you need more facts, help and advice.

[Ali49]

It was less painful 2nd time round Coralie and I was not as tired or zoned as the anaesthetic was lighter. I had my op at 3 and came home at 7. However I definitely think you need to chat to your BCN and have things clarified. You have coped with everything well up 9

[Coralie Stephney]

Ah thankyou Ali49. I do feel low and now I can't remember what he said about clear margins, just that he didn't get complete clear margins. I was on my own this time because I felt so positive. I knew something was wrong when I saw my consultant leave at 12. He saw me but put his head down. They were totally stretched today.if they go in again will it be more painful as well

[Ali49]

Oh Coralie I am so sorry that you were treated like that today. Did they get any clear margins? If they think the shave is worth doing then it must be worth a try but you need the facts so you can decide what you want to do. They told me they had 3 clear margins but when I went for my cavity shave the surgeon told me it was actually 2 as the margin to my skin was not clear. They then achieved the other 2 clear margins but it was only half a mm to my skin but that was fine. Did someone go with you today? If I were you Coralie, I would call your BCN tomorrow and ask if you can call in to speak to her and have your wound checked. Before my 2nd surgery, when I was feeling low, I rang and asked my BCN was it necessary and could I skip it and go straight to radiotherapy. She went away and spoke to my consultant, who then spoke to the oncologist with my questions. My BCN the called me back to say no it was definitely necessary and gave me great reassurance. You need them to clarify things and to give you advice and reassurance. Call tomorrow and let me know how you get on. Sending you hugs Coralie xxx

[Coralie Stephney]

Hi Ali49. I had my WLE 2 weeks ago but today got the results there was still more DCIS and they didn't get clear margins. The consultant today was very matter of fact and said we can do the shave on 30th December. Or you can just have a mastectomy and be done with it. The previous consultant said a mastectomy was overkill. Now I'm upset and confused. They didn't look at my wound today either so I took my steristrips off myself tonight. Felt the clinic was chaos today.

[Ali49]

Hi Coralie, I had a WLE and had very little pain but did get more pain a week to 2 weeks after my op. My nurse told me it was the nerves recovering. They also gave me a bra in the hospital that really helped. It was front fastening. Ask if you might have one. I also had a 2nd op and my breat is flat at the front although I do still have my nipple - it is numb though! The look of it doesn't bother me though - upto now anyway. I have been told it may shrink and harden after radiotherapy too. Hope you heal well and don't have too much pain xx

[Coralie Stephney]

Hi I hope your all feeling better. I had my WLE yesterday following a microdochectomy for bleeding nipple. I must admit the pain from microdochectomy was worse than how it is today? they took away the nipple so maybe that's where the main pain is felt. my right breast looks flat in the middle and was told it would be even smaller after 2 weeks radiotherapy. I have been reading about some ladies getting more pain after a couple of weeks. why is this? how long after can you have your nipple tattoo?

[Ali49]

Hi Crystal, lovely to hear from you and to know you are ok.
I start my radiotherapy on Wed and finish on 29th Dec with a 4 day break for Christmas. I think I am feeling a bit like you - nervous of how it will affect me! I keep thinking I just have to get on with it!!
All week the feeling of 'why am I having this' has been running round in my head but I know it is preventative and just have to stay rational. I don't cope well with tiredness and not being able to get on with things. All of my sessions are at 9am so I keep thinking I can come home and sleep if I need to and get up for the kids coming in from school
I am fine in myself and benefitting from being off work and not having to run round like a headless chcken! I am planning to watch lots of Christmas movies!
I will be thinking of you tomorrow. How often do you have to go and for how long? Let me know how you are getting on and I'll keep you in my prayers xxx

[CrystalTips]

Hi Ali49

How are you?  Hope you are healing well, have you got a date for your radiotherapy to start? 

I start chemotherapy tomorrow, so there's been a lot of organising to try and prepare as much as I can before it all gets going.

I'm still feeling quite calm about it all, though obviously very nervous about how bad the side effects are going to be for me.  The range of what can happen is very broad and no one can tell how anyone is going to react so I'm trying not to think about it too much and just wait and see.

I went wig shopping at the weekend which was very funny, Who knew there were so many options !!  I've got one that's pretty similar to my own style but just a shade darker, more like my natural colour actually because I usually dye mine.  There's a chance I won't need it as I'm cold capping, but better to be safe than sorry 🙂

How are you feeling about your radiotherapy?  I'm keeping my fingers crossed that it won't be too bad for you.

Are you managing to get any Christmas preparations done amongst all this btw?  I sometimes find it hard to think that real lie is going on at the same time that we're trying to deal with all this.

Crystal xx

[Ali49]

Hi Crystal how are you?
Had my planning apt for radium on Friday so will hopefully start radium in the next 10 days they said.
Feeling nervous about it as I don't cope well with being tired and not able to get on with things! But I know I just have to do as I'm told.
Any date for starting your treatment yet? Hope you are managing to stay positive xx

[Ali49]

Hi Crystal, I am really glad that you have been able to make the decision and feel happy with it. I am sure you are choosing to give yourself the best chance of no recurrence. You have lots of love and support to get you through it!!
I have recovered well from my surgery and I am meeting with the oncologist on Wednesday to discuss radium and hopefully get a date for it to start. I am anxious about it but just want to get it done and dusted!
I haven't made any plans for Christmas - I usually do dinner for 15 - but this year I am going to take advantage of everyone's hospitality. I am just trying to get my kids stuff sorted before treatment starts!

It is strange the relief that comes with making a decision isn't it? It is like a weight lifted. Let me know when your treatment is starting and what your plan is. I'll let you know my plan too xxx

[CrystalTips]

HI Ali49

After a lot of soul searching and a lot of research I'm 99% certain that I'm going to go ahead with the chemo.

Triple Negative is already more likely to come back than most other types of BC and I just couldn't stop the what ifs going round and round in my head. 

Since making the decision at the weekend I've felt calmer and have actually been able to sleep!

How are you doing by the way?  Have you healed from your surgery now?

Crystal xx

[Ali49]

Hi Crystal, i
t is a tough one for you and we could all give opinions but I know at the end of the day it has got to be the choice that you are most comfortable with.

It is so much easier when an expert can tell us what they think is the right thing to do.

Why do they suggest Chemo when the cancer is not there anymore?

Would a mastectomy be as effective?

Is it worth a tough time to achieve better peace of mind?
Is it better to avoid the chemo, have the radium and just bet on with things?

Thankfully I don't have to make the choice.
I Will say a prayer that you come to a decision that you are happy with xxx

[CrystalTips]

Hi

I'm ok thanks - still very undecided about chemo though.

On one hand my cancer was tiny 4mm, was completely enclosed withing 15mm of DCIS and I had a 7mm clear margin.  My lymph nodes were clear and the chances of it having spread any other way is very very slim.

On the other hand, it's triple negative.  There are no targeted thereapies (so nothing like Tamoxifen) available to me so the only way to treat it is surgery, chemotherapy and radiotherapy.

The ladies on the triple negative part of the forum all think it's worth going through chemotherapy just to be sure, but after a lot of research the toxicity of chemo is massive and the potential benefit to me is only 4%.

My BCN has been very candid and said that she didn't think it was worth it in my particular situation, and even the Oncologist said for her it was too close to call and they couldn't recommend me having it, so it was down to how I felt.

My sensible head is telling me the answer should be no, and just go with radiotherapy - the small frightened little girl on the inside is sayng, shouldn't I throw everything at it ??

[Ali49]

Thanks for answering Jas and I hope you are still coping ok.
Crystal how are you?

[Jas58]

NHS guidelines is 15 but I am being treated privately. My oncologist believes 25 sessions at a lower dose each time is less stressful physically but who knows....

[Jas58]

Standard NHS treatment is 15 . I am being treated privately. 25 sessions is standard for most of the rest of the world. We all get the same dosage but NHS is higher each day. There is such high demand for radiotherapy and waiting lists are long. My oncologist believes 25 at a lower dose gives you less trauma but plenty of women seem to manage well on the higher dose so who knows..... x

[Ali49]

Jas so glad to hear you are coping well with radium. I wonder why you are having 25 sessions but I am only having 15?

[Ali49]

Hi Crystal,
So you, like me have had all cancer removed with clear margins. We are of a similar age with the only difference being your 4mm invasive but it was in the middle of the non invasive and hadn't actually gone anywhere! I am having radium to reduce risk of recurrence but you have a choice to make.

I understand why you feel confused!
Why don't you start another thread to see what others in the same position have done?
Also could you ask for a 2nd opinion?
When do you have to decide?

[CrystalTips]

Hi

Sorry I didn't make much sense.  I already have an 84% chance of this never coming back.  Chemo would add another 4% to that and then radiotherapy will add another 3/4% as well.

Crystal xx

[Ali49]

Hi Crystal, so chemo would lessen the chance of it coming back by 4%? Or would make it 4% more likely to come back?

[CrystalTips]

Hi Ali49

So my results were good, no cancer in the lymph nodes which was a relief.

I saw oncology today though to discuss next steps and it's not quite cut and dried.  Apparently having chemo would add 4% to my already high chances of this not coming back.  I asked the oncologist if she was recommeding me to have chemmo and she wouldn't do it, she was saying it was too close to call and that it was completely my decision.  But that I could also reasonably choose not to have it and just have radiotherapy if that's what I wanted.

I've got time to think before I have to make a final decision, but I'm really confused which way to go now.

Crystal xx

[Jas58]

Glad to hear all went well 2nd time around. I am on 13th of 25 radiotherapy sessions and mostly ok just a bit sore under armpit 😉

[Ali49]

Schumi remember that it is only a week since your op so swelling etc won't have all gone yet. Goid luck getting dressings off today xx

[Ali49]

Hi Crystal and Schumi,
I got good news today. All the DCIS has gone and they got clear margins. No invasion was found. Phew!! Just got to wait for appointment to plan and start radium as a preventative measure. I am very relieved and so grateful for the care I've had.

Crystal I will be thinking of you and praying for good results for you tomorrow. Let me know how you get on x
Schumi, I had a WLE on 19th September and the time that I got most upset was when the Steri strips came off - it felt like the wound being bare also exposed my emotions!! When the swelling went down I had a dip at the side of my nipple which wasn't really noticeable in the mirror but looked horrible when looking down. They didn't get all clear margins with WLE so I had a cavity shave on 27th Oct. This time I had a female surgeon and she said she was going to do the shave and try to move tissue around to lessen the dip. It is 2 weeks tomorrow since that op and upto now, the dip is not back but my boob is a bit flat at the front but not too bad. Again though, when the steri strips came off I cried again. Try not to get too down, your boob will recover. It will just be a bit different. Get all your nice clothes out that you feel good in and wear them. My confidence has really taken a knock with all this but dressing nice helps to overcome this a bit!! Just jeans and nice tops I mean - nothing fancy!!
Hope you feel better and hope the results are good on 22nd too xxx

[schumi12]

Hi Ali, pleased to hear that you are recovering well. When do you get the results?  I had my WLE last Thursday but have to wait until 22nd for the results.  Recovering well but hate the look of my breast, the dressing comes off tomorrow so I imagine it will look even worse then.  `I know I should be grateful that it was "only" DCIS and hopefully it's all been removed but feeling pretty down just now.

And to Crystal, good luck with your results too.

[Ali49]

Hi Crystal, I am ok thanks but with the usual nerves before going for results!! The healing has been good and quicker this time so that's good too. I will let you know what they say.

How are you doing? Is it your results on Thursday? How are you feeling?
Xx

[CrystalTips]

Hi Ali49

How are you doing?  Hope you're healing well after your op.

Am keeping my fingers crossed that your results will be good and that you will have clear margins.

Let me know how you're getting on 🙂

Crystal xx.

[Ali49]

That is great news Crystal and I will keep my fingers crossed and prayers going that you don't need chemo.
No not got My apt for follow up after last week's op yet. I am praying that they got clear margins and I can get on with radium.

It's almost like we spend our time holding our breath waiting for results and then getting ready for whatever comes next!!

So glad it was positive for you today. Breathe out and relax a little ready for whatever is next. Hugs xxx

[CrystalTips]

Hi Ali49

Really appreciate your positive thoughts.

So results today were good.  There were no cells at all in my lymph nodes which is obviously great news.

Next is to see Oncology to talk about what treatment comes next - apparently there might be a small chance I won't need chemo, which would be great, but I'll have to wait and see.

Have you had an appointment with Oncology yet?

[Ali49]

Think8ng of you today Crystal tips x

[Ali49]

I am Crystaltips thank you. I don't have a date for results yet but they said 2 weeks. I hate the build up to surgery then I hate the build up to results! It is all about waiting!!!
I will get my prayer mat out for you for Tuesday. Stay strong and positive xx

[CrystalTips]

Hi Ali49

I'm really glad your surgery went well.  I'll also keep my fingers crossed for you that you don't need any more surgery.  When do you get your results?

I'm just trying to keep myself as busy as possible to try not to think about it.  My results are on Tuesday though so I'm expecting to be fairly stressed for the next couple of days.

Hopefully though they won't be too bad (even if there are cells in the nodes, I'm hoping that it's not many) and I can get on with seeing oncology and starting the chemo.  I'm really not looking forward to it, but the sooner I start it the sooner it will be over!).

Hope you're still taking care of yourself and resting as much as you can.

Crystal   x