Have just joined and read loads of posts but thought I would post my own as I have tons of questions! was due to get married in Barbados in 6 weeks but instead im facing a mastectomy and recon on 19th march for high grade dcis! My mind has gone into overload and im crying one min and trying to joke to keep everybody else at ease the next. Have spoken with BCN but cant remember half of it. Im having a back flap for my recon and worried sick I wont have proper use in my arm after (which i need for work) has anybody else had this? When will I know if i need chemo? not sure I could handle that as well as losing a breast!..and to think I should be on a beach soon marrying to the man of my dreams! 
somebody, please tell me that this gets better!!!
Hello Deed, so sorry you have had to join us, but we welcome you with open arms.
My advice is firstly try to make another app with your BCN and take a good friend with you, two ears are better than one… It is such alot to take in and one hell of a rollercoaster ride.
I can´t comment on your specific op as mine was different, although I did have 22 lymph nodes removed and this limited movement in my arm.
There are lots of lovely ladies on here who i`m sure will be able to offer you all the advice and support you will need, they will be along shortly.
Chemo I am afraid is a strong possibilty, it´s not that bad though, I was dreading mine, I started just over a week ago and felt a little ill with SE´s for a few days but fine now.
Just remember take each day at a time and all the treatments are doable, however bad you feel theres always someone here to listen.
It´s sad that you may have to put your honeymoon on hold, but it will be worth it.
Take care, love Teresa xxx
Hello Deed
I am so sorry about your diagnosis you will feel frightened and scared it is only natural, and what a horrible time for this to happen.
let me tell you now that you are going to get through this, I had a mastectomy in october with immediate reconstruction, I opted for a implant with tissue expansion, okay It is not quite right yet but I was realistic and knew it would take several months to get the desired result but I am getting their and I know that it will look damm near like my natural breast as it can possibly be, they take into account that I women needs to feel like a women and you will in time get that back, You will have drains for a few days and feel quite sore and numb, but this is due mainly to the nerves, but you will get back full usage in your arm , just make sure you do the exercises so the muscles keep supple,
When they do the op they normally take some lymph nodes away to check that they are clear from cancer, you normally get your results from the pathology report around two weeks post op, this will determine grade, stage, and any lymph involvement, Mine from the initial biopsies was a grade 1, in the ducts (behind nipple), when the report cameback it was a grade 2, and was ductal as well as lobular, and one lypth node was infected.
I therefore had to do the chemo route and have just finished my last treatment, please don’t think you are going down that route, just try and take one day at a time otherwise you’ll drive yourself crazy, please massage me if I can help you in any way
best wishes Ann x
Hi Deed
Oh angel what a cr*p time for you! But as both Ann and Teresa have said you will get thru this! I had mastectomy for two large grade 3 tumors and lymphatic spread back in May 09, Like you I was soooo not prepared for everything that happended. I am currently researching reconstruction now as It was not right for me to have immediate due to the extensive spread into my lymphnodes and that I would need radiotherapy. Here I am now 9 months later getting ready to go back to work on monday… never thought i would see it to be honest.
If i was in your position (which I am not and hindsight is a fabulous tool huh?) you need more time with your BCN and or surgeon before you make any more descisions. You need some support - ring the help line here on BCC the girls are lovely and will do their best for you.
thinking of you and sending out positive vibes ((((((((((())))))))))))))
xxxxxxxxxxxx
Thank you to both Ann and Theresa for your kind words and advice. Thanks for the comment muummytummbles, its great to hear from people that have been through something similar and come out the other side. I have another appointment with the BCN and surgeon on Wed so will ask a few more questions.
I think im becoming paranoid because every ache or pain worries me that its spread. My chest hurts and is so tight but think its prob just stres…or paranoia!!
I have told work that I will be back in July, perhaps im being a little optimistic?
deed xxx
Hi Deed I really feel for you as I had a mastectomy with imm recon with a backflap in sept 09 and now I use my arm as I did before. My new breast and my back feel a bit strange but cause me no problems I resumed my job of looking after my 2 young granddaughters after xmas with no trouble at all.I know I’ll never be the same person mentally and physically, not better or worse but different.You aren’t alone Iam thinking about you and so are lots of others.
Hi Deed,
Poor you! There is never a ‘right’ time to get this dx but just before your wedding is just rotten for you.
I got my dx on 9th Feb last year and on 9th Feb this year a load of friends came round with wine and nibbles and we all celebrated the fact that 1 year on I am still here annoying everyone and things are looking very positive! I am telling you that because I remember so well that utterly devastating feeling, as you are feeling now. But yes, things do get better.
As everyone says, you will get through it, but try to take things a bit at a time otherwise it all gets too overwhelming.
I only found this place about a week ago, didn’t know it exsisted, but wish I had as there is so much support and good advice here. I’m glad you have found it early on.
Take strength from your hubby to be as I’m sure he will want to help you on this journey and barbados will be the pot of gold waiting for you both at the end of the rainbow.
Love and hugs
Esme x x
Hi Deed
Welcome to the BCC forums where I am sure you will continue to receive lots of support and information. In addition, BCC have published a booklet about DCIS which you may find helpful to read, we also have one about reconstruction too, the links are below:
Our helpline is open 9-5 weekdays and 9-2 on Saturdays on 0808 800 6000, please free feel to call for further support and information.
Take care
Lucy
Hi Deed
So sorry to hear about the dreadful timing of your dx - not that a dx of breast cancer can ever have a good timing. I had dcis too and ended up having an mx but as I had no lymph node involvement I’m not havingh chemo. I know everyone’s dx is different but dodn’t automatically assume the worst. As the other ladies have said, take each day as it comes and deal with facts on that basis. And I really recommend taking someone with you. They will remember the bits you can’t or get them to write down the answers, as my OH was as overwhelmed as me on my dx appt and he couldn’t remember anything either!! At my post op appt I wrote down all the questions I wanted answering to give to the surgeon and made a duplicate copy for my OH so he could rcord the answers. Worked a treat. Good luck!!
Annys x
hi deed,
reading all the posts on ur thread theres nothing i can really add except you will get through this and become a stronger person with it… i was diagnosed with High grade invasive DCIS of left breast… it left me numb to say the least because i was lookin for lumps not DCIS… i’m only 39yrs old and they said i was in the 2% bracket for this diseases. it wakes you up… i had my surgery Oct 2009… and reconstruction same time… i saw my plastic surgeon today about my new nipple … they are delayin it for 3 mths …
i am a fighter and will not let this diseases rule me … my breast is not perfect yet … but they tweek it as time goes on … i had LP flap with back muscle etc … still a little tender, but it is settling … i go to Maggies at Charing cross for my free massage… it helps with the sensitivity on scar…
you will make some good friends on here all are helpful… i’m meetin up with a couple of ladies in london where i am based…
so any time you want to vent … just let rip we have thick skin … we have too…
Sarah
Sarah
Thank you so much for the message. Have you had chemo? I was in tears toda with my gp who states that because my results have come back 30% estrogen positive then she thinks I will need chemo (THINKS!!!) Its left me wondering all day! I dont even know if its invasive yet!
I feel completely numb, I sit and cry and my poor partner doesnt know what to do to make it better.
Im 41, and like you, I was looking for lumps and this kind of comes up and bites you on the arse!! lol
Massage sounds great. My mum is taking me on a pamper day just before my surgery date, bless her, anything to try and relax me.
Have you returned to work yet? My job keeps me sane and already trying to give them dates for my return (much to my childrens horror!!)
thanks again Sarah
deed xx
Dear Deed, What an awful thing to happen when you were about to get married! I am so sorry to hear it. I had invasive ductal carcinoma diagnosed in Sept 09 but after lumpectomy they discovered DCIS was also present in several areas so I had to have MX and immediate recon in Nov 09. I also had the back flap recon. The initial few weeks after the op were very hard, but they had warned me that, and then it was a gradual improvement each week. I had some really good physio which helped with my back and arm and now I can do pretty much everything. I am not quite as strong as I was, but I wouldn’t say I feel weak. Things like opening a stiff freezer drawer, pulling up a ceiling rack full of washing, lifting a heavy Le Creuset casserole full are all OK for me now, although I couldn’t do any of these things in the first 8 weeks or so. You have to be very patient, but it will all work out. I was lucky to have a fantastic surgeon - I hope you do too. I am going back for the first stage of nipple reconstruction next week. Good luck, and if you have any more specific questions about the op just ask. xxx
Hello there,
have had skin sparing right mx for multifocal ILC with LD flap recon two weeks ago,in surgery 4+ hours, in hospital for 7 days, and doing well at home, not driving yet or lifting heaving things but doing all day to day things round the house & looking after 8&10 year old, most problems with the lymph node clearance really, seroma on my back and pins&needles sensations down my arm. But all managable and the medical team is brilliant, I felt they took time and I felt involved. Starting 6 rounds of chemo when wound fully healed.
Takes time to get your head around it all, and of course, as the two sides don’t match it will be a while to get it sorted but when I have a bra on from the outside, no one would notice at the moment.
Sorry about the awful timing, I hope you get plenty of support to get you through this, the forum is brilliant because we can be ourselves. Any questions let me know! xxxxx
Hi Deed,I think your GP is wrong in telling you that she thinks you may need chemo because your ER+.They wont really be able to tell anything for certain until after the surgery,but if it is DCIS as suspected which is contained in the ducts and hasn’t developed the ability to spread yet then you wont need chemo but will probably be offered tamoxifen tablets(they block the oestrogen) because its ER+.I had grade2 IDC (invasive ductal cancer) and some high grade DCIS (ductal cancer insitu).
hope you get the best possible results best wishes Mel xx
Hi Deed
Just to reassure you, I WAS DX dcis but 8mm was found to be invasive. However, even though this result was worse than originally thought I still didn’t need chemo becuase it hadn’t spread to the lymph nodes. The mx was enough to solve the problem. I am also ER+ and have been given tamoxifen, not chemo to deal with it. Hope this reassures you and stops you worrying a little.
Take care.
Annys x
The decisions on treatments are taken after your full pathology results are available and taking into account all your medical statistics, no two cases are the same! I hope you will get the best possible results!xxxx
Thank you soo much to everybody for posting comments. This site is fabulous in answering questions and for airing your fears and anxieties. Today I woke up in such a positive mood and determined to beat this for the sake of my 3 children. I WILL get married in Barbados in November!!! Thanks again and good luck to everybody who is still in this “journey”
deed
xxx
Hi Deed,
Glad to hear that you are feeling more positive and that the wedding is planned for November. How exciting! I know this is still a difficult time for you but keep us posted about the wedding plans as it sounds as though it will be lovely!
Esme x
hi i had masectomy using tram flap surgery 6 years ago my arm movement is fine just remember to do excercises ,keep positive it really will be fine not to say it will some times feel a bit stiff ,but yoga has helped me a lot take care jane x
Hi All. thought I would post an update. Saw the surgeons yesterday, im going to have two to get down on theatre time! Ive been measured and prodded and poked - who would have known that your nipple is supposed to be 21cm from your shoulder blade! I would like to see him breast feed 3 children and not watch it go south!!ha ha -
They are quite optimistic that its still non-invasive, im not sure how they know that and although I want to believe him im convinved he says it so i stop worrying and crying. The count down can start to operation day - 15 days to go!!
hope everybody is well and positive.
deed
xx