Hello you lovely ladies out there. I’m looking for some information and help. I was diagnosed yesterday with DCIS and have been told I have to have tests on the sentinel nodes and a mastectomy. My life has just turned upside down since finding out and so far I haven’t stopped crying. I’m terrified that the cancer has spread elsewhere and I can’t deal with having to have a reconstruction. I feel so alone and scared and I don’t know what to do about it. Can someone tell me how long the operation for the mastectomy takes and how soon before you are back on your feet; I’m not used to sitting still! Also, the consultant mentioned yesterday that sometimes people can have an allergic reaction to the radioactive dye they inject for the sentinel biopsy and this has scared me too as I have a few allergies. Can someone tell me what it feels like?
Welcome, sorry you have a reason to post on here but rest assured you will get alot of support.
My diagnoses was slightly different to yours as I only required a WLE so cannot comment on the masectomy sorry, I did have a SNB and unfortunately I did have a reaction to the Dye which my Oncologist was very shocked about as he has never come across it before as it is ( he said) is very rare!? Trust me eh!! I was fine apparently my blood pressure and oxygen levels dropped and I came up in a very fetching RED BLOTCHY rash lovely!!!
I know its hard and alot to take in but just take one step at a time try to distract your mind the best you can.
Try to think positive and that your medical team will do everything to treat it.
Do consider giving our Helpline a call. They can offer information and support and a “listening ear” to talk things over. They are open from 9-5 on weekdays and from 9-2 on Saturdays. The number is 0808 800 6000
I was diagnosed at the start of February and can remember only too well the feeling of being terrified and feeling like the cancer is everywhere! The hardest bit for me was waiting for a CT scan to confirm that it hadn’t spread anywhere else. I had grade 3 invasive ductal and the nodes under my arm were affected.
At the start of March I had a lumpectomy and full node clearance. When I returned to hospital for the results the consultant recommended a mastectomy as they weren’t happy with the margins and also with the amount of nodes involved.
I had my mastectomy with reconstruction 2 weeks ago and am getting on great. Everyone is different but I have to say I am glad I had the reconstruction at the same time as the result is fabulous. My operation took 11 hours as they used the fat from my tummy to make the new breast. The day after the op I wasn’t allowed out of bed, on the 2nd day I was allowed out of bed to sit in a comfy chair for most of the day! The day after that I was up and about, having a shower, walking around the ward. Each day it gets easier. I was in hospital for 6 days, and the nursing staff were fab, really supportive
Your emotions will be all over the place just now, I know mine were. Everything is so new and confusing at the start. You will probably feel disbelief that this is happening to you. It will get easier. Have you been given any indication of when you are likely to start treatment? The worst bit is the waiting. Once you know what is happening it is easier to deal with. Keep in touch and let us know how you get on, sending you my best wishes. Lynne
Hi Gilly4
I too am new to all this and have just been diagnosed with DCIS and Invasive ductal. I am really unsure about everything that is going on but everybody on here seems to be really great and a real support. I go into hospital tomorrow morning at 7am for some nodes removing to be tested to see if my cancer has spread to them.I have my dye put in at 9.15am in the morning. The op is only day surgery so if i feel up to it i will send another message to you on Saturday to let you know how i went on. I too am waiting to have a mastectomy and reconstruction, but because the cancer is now invasive i may need chemo as well.
Stay strong,i don’t think its gonna be easy but we can both beat this.
Lots of love
Julie x x x
I was diagnosed last Thursday with grade 3 Ductal cancer and I to am having a masectomy and SNB I am scheduled for surgery on the 4th May just wondered what date your surgery was. I am not sure how long the surgery takes but my BCN says I should come in to hospital on the morning of the op and should hopefully stay in one night and go home about lunch time the next day. So that seems very positive to me. Even though I have to carry a drainage bottle around for a few days. I to found my self crying and also have the same thoughts that it has spread everywhere when ever I get the slightest twing so I guess we all have the same thoughts. I have found these forums to be so fab over the last three weeks. If you every fancy swapping notes please feel free to message me.
Hi Gilly, sorry that you have to be here, but you will find so much support. Sorry that you feel so scared but it’s totally understandable, have a good cry if it helps. I didn’t have a mastectomy, although I will have to have one after I finish my chemo. I too am scared and worried about a reconstruction and haven’t begun to some to terms with that yet. Please feel free to PM me anytime!. Please try to take things day by day and don’t put too much pressure on yourself. I met a lady in hospital who I have become good friends with. She had a mastectomy and the op with a sentinel node biopsy took 2 to 2 and half hours I think. I think that the hospital stay is overnight but I’m sure some other ladies will be along soon to give you some advice from their personal experience.
Take it easy following your op and accept help that is offered. After my surgery, I was able to get up, wash and dress and potter about, making snacks etc and I got out of house most days. You may have some restriction with the use of your arm following Sentinel Node Biopsy but the hospital should give you simple exercises to do and give you a list of do’s and don’ts. If they don’t, you can always come on here and we’ll help you.
I couldn’t take everything in at my diagnosis, it was so overwhelming and I was in pieces with the not knowing and worrying about spread of cancer. This feeling does pass as I began to learn more I felt a lot more in control. I wrote a list of questions and then met with my breast cancer nurse and she explained things to me. Don’t be afraid to ask questions as I am sure you will have more over the next few days.
Do give the helpline a call, they are great and you can talk through your fears.
Hi to Gilly and all those newly dx posting on here.
Just to add my support and wishes really. I was dx in Nov and opted to have my mx and recon after chemo, rather than the other way around, because i thought it would help me more pschologically.
Best of luck with your treatments, it is a whirlwind to start but once it does you will feel better. I’m also really surprised how quickly the time passes and hopefully you will be too.
Kepp posting - this forum has really helped me out many times. x
Sorry you find yourselves here and good luck to those about to undergo surgery.
This is absolutely the place to get help and support of every kind. You will find those who are in exactly the same boat as you, some who are paddling a little further ahead, and some who are well ahead on the horizon.
However, everyone looks around and back all the time and you will find that there is always someone along to give a helping hug, a word of advice, really useful technical info, a giggle or just say ‘Yup, I’ve been there and this is how it was for me’!
I had a WLE and SNB with 2 further re-excisions to get clear margins. Every bit of surgery was very manageable and I am healing well. Probably chemo, rads and tamoxifen for me next but wherever you are as you deal with this b****y disease you will find someone to help you.
As in my previous comments I am a newbie but just wanted to say after reading the posts of the inbetweeners the other night my husband asked why I was laughing all I could say it was all about knitting!!! Those of your who posted will know what I’m talking about. Please keep the posts going as it’s so good to know humour can still rise to the surface.
Thank you so much for your support, I feel that this site is going to be a lifeline for me. Just knowing there are others out there who have, or are going through the same as me has helped me hugely. I have managed to stop crying (!), and saw the nurse today; I feel so much better about things. Provided the sentinel node biopsy is clear, I’ve decided to go ahead with the mx and recon. Part of my problem is that I have an irrational a fear of anaesthetics, no bad experiences but keep thinking I’m not going to wake up. So in for the node biopsy Wednesday and the mx and recon at the end of May. I was also scared of having the blue dye injected in case I had an allergic reaction, but it’s ok, apparently if it happens you’re unconscious anyway, and they can spot it and treat it. I think I’ve bought myself some time to prepare for the big op, and I plan to lose some weight and here’s the biggie, I need to stop smoking, but I’m going to give it my best shot, stress or not stress!
Will let you all know how I get on with my results.
Welcome to the new ladies on this thread. As others have said this site it a complete godsend, and I’ve cried and laughed and shared all sorts of things with the others on here, because I know you will understand.
Hi Gilly and others newly diagnosed and waiting on treatments. Hang in there and remember you will be in good hands.I was diagnosed end of Jan this year and had sentinel node biopsy beg Feb and mx and recon one week later. The biopsy was just under two hours and I was back in ward. Other than a bit of discomfort under arm this was ok and reassuring later then to know nodes were clear and no more would be taken during mx. I think mx would have been done in just under two hours but as I had ld recon I was in theatre five hours, but home on day five and no regrets with decision on treatment. Oh and managed to stop smoking too! Still stopped three months on - very liberating feeling I have to say so all the best with this. Think about all the nice treatments and shopping you could do with cig money saved.
Thank you for sharing I have cut down on the ciggies and as soon as tomorrow is out of the way, I will use the patches to stop. Had a double whammy last week as I was newly diagnosed on the Wednesday and made redundant from my job on the Thursday so I was really stressed and smoked more. The more I thought about stopping, the more stressed I got and the more I smoked. I was going round in a circle. Never mind, hey just need to stay positive and take one step at a time. Although I know that my new breast will never replace the old one, the photographs I saw yesterday were very good. I will be more than happy if mine looks half as good Are you happy with yours?
Hello all, just to let you know we have a thread running to support those of us having mx at the moment. I had bilateral 6 weeks ago, the latest was on friday. Feel free to join us, there’s lots of info and experience on there.
hello lovley ladies. i was diagnosed a month ago and had the lumpectomy last week. i have been reading all the post on this site and it has helped me so much, i dont feel so alone. i am in Spain and there is not the help here so thank you all for all your post.
i am starting RT shortley and dont know what to expect. anyone got any adivce please??
Also i am trying to be so brave infront of the kids and family but inside i want to scream and shout and i cry when ever i am alone. i guess this is normal??? i dont know how to get over this as normally i am a happy go lucky kind of a person, life and soul of the party and now i just want to curl up in bed and be left alone. i dont have any one to talk to really so i guess that is why i am going on and on sorry.
my friends and family are all being so wonderful that i cant break down as i dont want to upset them.
Definitely happy with results from op. The first few days I felt completely in awe of surgeon’s work. Thought it was just amazing! I was so pleased too to feel that no-one would ever no that I had a mastectomy, as the scarring is just small circular area and it seems like new breast reconstructed almost from inside out. Quite a long scar on back but again quite well hidden with bra/swimsuit line. Still to go back to see surgeon in six months to get ‘tidy up’ with good breast and nipple recon and anything else he says is bugging me! ( This was when I queried the little dog ear he left at the end of the scar on back).
Sorry you are having a rotten time at the moment. I think it is really hard when you are waiting on results or treatments to begin as it is the uncertainty of it all. When I got my dx my sister had been diagnosed one year earlier and I phoned her in blind panic (bless, she was so calm with me during the whole time I was getting tests and treatment)and she kept me informed about her own procedures, which were almost identical to mine, although her bc was slightly more advanced. I did not have RT, but many of the ladies on this site I’m sure can offer more specific support in this area as they will have more experience. It did help me to write down a list of questions to ask the surgeon/nurses etc as it gave me some feeling of control over things. Take care though and I hope you are feeling better about things soon.
I have cut down on the ciggies and as soon as tomorrow is out of the way, I will use the patches to stop. Had a double whammy last week as I was newly diagnosed on the Wednesday and made redundant from my job on the Thursday so I was really stressed and smoked more. The more I thought about stopping, the more stressed I got and the more I smoked. I was going round in a circle. Never mind, hey just need to stay positive and take one step at a time. Although I know that my new breast will never replace the old one, the photographs I saw yesterday were very good. I will be more than happy if mine looks half as good