Where do I start? I was diagnosed with DCIS 8 years ago and given an immidiate masectomy. I am terrified all the time, I grew up watching my Mum die of cancer. I have a check up next feb, but I am already getting very stressed about it. I just start screaming in the waiting room and the only way I can stop is my biting my arm very hard. Sometimes my doctor gives me some drugs to take to try to quieten me down but then I am just a bit of a zombie, which in some respects helps a bit, but I am unable to communicate with anyone. My partner told me 8 years ago he didn’t want to see my scar and prefers to remember me as I was, that hurts so much. I am grotesque to even the most closest person to me and I can barely look at myself when I have to wash. I keep reading in papers that women are no longer given a masectomy for DCIS so did I really need the operation. My side is hurting at the moment, I bought a new bra that seems to have rubbed but as I have no real feeling on my side I am not really sure what is happening and that has made me even more afraid. I have no one to talk to so I just don’t know what to do! And am too afraid to see a doctor. My GP is a man and very sarcastic. I just want to creep away and die somewhere…
Hi JP
I am so sorry that you feel this way and are having such difficulties 8 years down the line. As far as whether your mx was necessary, I believe that today women do have this for DCIS and it really depends on how widespread it is so please do not think that your op might have been unnecessary.
You must change GP as soon as you can! If yours is unsympathetic then it is of no help to you whatsoever so either find another doctor in your practice or change GPs altogether, ask your friends perhaps what theirs is like?
It sounds as though you might find it helpful to have some counselling, this is often offered at no cost by local cancer charities. I had eight sessions offered by the Dimbleby charity based at St Thomas’s in London. If you phone the helpline here they would be able to tell you where to find out what counselling is offered newr where you live.
Take care.
Mary
Hi JP
Think you could do with a virtual ‘hug’ right now…
Firstly, you side which is hurting. Do you still have acccess to a BCN? if so, could you give her a call and explain you are in pain? Could it be a pulled muscle? Does the pain respond to pain killers or a heat patch at all? Maybe ring your surgety and ask to see a different GP? Don’t suffer in silence JP, you need to be checked over for peace of mind.
I am sad to read of your partners comments re: your scar, really I am. How is the relationship generally? Do you still love one another? I don’t wish to pry or step over the mark, but you are still the same person, scars don’t change who you are. You have had a DX of a cruel and lifechanging disease, does your partner not see that JP? Would some joint relationship counselling help? I wonder if your partner is grieving for your old body? I know I still do at times (6 years on from single MX).
I am not familiar with DCIS, but as Mary said to you, I guess it depends how widespread it was to begin with and also the chances of it developing further later on, as to whether you have a MX or not?
Looming appointments can be VERY stresful indeed, but try not to let that appointment dominate your life and stop you from enjoying the good things, or else stupid cancer has won (and that is not so good for the mind and confidence). Would you consider some CBT or talking therapy? You might find it a relief to offload this onto a professional who won’t judge you, but instead will sit and listen?
Please take care of yourself JP, we all understand your thoughts and fears, we really do. But somehow we need to find ways of taking back some control of our lives. BC can take an awful lot from women and more if we let it.
Will you keep in touch with us,so we know how you are? xx
Hi JP I just had to respond too, but hard to know what to say to you.
Phoning your BCN. I think is a positive thing - no waiting room or appointment triggering the anxiety. Less pressure. What about phoning the helpline here first? There’s no pressure on you in any way from them, nothing at all. You don’t have to tell them your name or anything. I phoned them and spoke to a lady who was 12 years cancer free after surgeries and treatment, she was just so lovely and it helped me so much just to be listened to.
Be well and big hugs
x x
Hi JP and a lovely warm huggy welcome from me.
I echo all that the other lovely ladies have said, plus you may feel more comfortable with a female GP if there’s a good one at your practice. I always have a lady 'cos I’ve always felt more comfey with them espesh when it comes to boobs and lady bits.
And as Catokitty has shown (so sorry about your Mum Cato), you’re being stopped by very deep rooted and sad, frightening connections/experience of your Mum. If you could get some form of therapy that’s free, it could help you to manage it better.
Sorry, I’m afraid I’m having to bite my tongue about you’re boyfriend. Does he not realise he is adding to, worsening in fact, what you’re coping with boob wise/body image wise. Not what ANY female wants or needs having been through the trauma you have, and not much help to you - is it! That’s all I’m saying on that.
Please keep up with your posting on here JP, we’re all here for you and just want you to get better and help in anyway poss. We don’t care what you say or talk about, off load it on here - it’ll help believe you me. Have a good rant or sob if you want - we’ll all come out in sympathy
Do you have a good friend who’d be prepared to go to appointments with you ?? to help prop you up a bit and give you a bit more confidence rather than you being so fearful and struggling on your own.
And Yes, women do still have a mastectomy for DCIS, someone recently posted about such a procedure elsewhere on the forum sections. Have a good route around under the DCIS/LCIS - under the “I am Just Diagnosed” board, if you haven’t already. It’ll help dispel your thoughts of it having been unnecessary.
May I ask how old you were when you had your mastectomy ??
You take care, speak soon, let us know how you’re doing with it all or if you’re struggling with something. You need as much help and support from everywhere possible at the mo’ sweetie and you’ve already made a good positive step forward coming on here.
Hi to everybody else on here, hope you’re all doing well.
And Naz, what have I been telling you about retraining in counselling/psychotherapy (or even some form of alternative therapy - acupunture, massage therapy, hypnotherapy etc etc!). You’re MADE for it lovey.
Lotsa love Delly xxx
Hi JP,
Just seen this thread and wanted to reassure you about your mastectomy - I was diagnosed with DCIS in April and had a mastectomy in May. When the final pathology report came back they had found a small invasive tumour among the DCIS which hadn’t shown on mammogram, ultrasound or biopsy. So please don’t worry that your operation was unnecessary.
Glad to hear your GP is taking your fears seriously and hope that the counselling appointment comes through soon.
Big hugs xx
Hey JP
That’s great, and all very quick. Your NHS mental health services sound a lot better than where I was. Got left for a year, missed me off the system, then took another 6 months to get it started. Was only allowed 6 sessions which wasn’t enough. Mine wasn’t just about the effect of breast cancer and loss of both boobs, I’d lost my 3 family members and other things on top.
Glad you switched your GP, she obviously feels very strongly that you need some help.
Speak to you again. Let us know how your counselling is going
Delly xx
Hey JP, that’s flippin fantastic. I’m madly impressed with all your forward leaps and bounds. That was obviously a great bit of counselling you received with a good understanding, caring therapist who was also innovative to take and go with you to hosp like that. AND, glad you’ve been signed off.
Wish I could say the same myself. I’m still fantastic in the mental dept, But falling to bits bodily wise. Had a minor knee arthroscopy tidy up 10 days ago. Was worse than we thought when he got inside the joint. Went dacing at a club the same night. felt good to give it the exercise, did ME a loada good too. Didn’t get in till 3.30 !!!It’s doing well, had the stitches out yesterday.
Unfortunately, I’ve been having a shed load of tests and scans due to a stomach problem I’ve had for 3 months and kept me ill over Xmas so it was a write off. Was glad of a quiet one. Had a noisier New Year tho’. Things have shown up on my liver so are being further investigated. Had an Gastroscopy this morn - found lesions in stomach so took two biopsies. I’m waiting on an appoinmnt for more detailed scans now.
We’re trying to and hopefully rule out 2ndary BC, but also any other cancer.
I’ve also got a Hiatus Hernia. There’s a valve at the start of the stomach and it’s faulty so its doesnt close properly and allows some of the acid to escape into the gullet.Explains why I’ve been wretching a lot when I brush my teeth. Thats been going on in bouts for years.
All keeping me VERY busy
Do you fancy joining us on some of the other threads now that you ARE COPING NOW. There’s “Just Diag and wanting to talk to someone” which is a very fast paced one because there are a lot contributing to it. Anyway, take a bit of time to look into the different sections. If you’re ever up late or can’t sleep, join me on THE NIGHT BIRDS, for some cheeky banter fun, a moan, advice, sob.
WELL DONE YOU.
Loadsa love Deelywelly xxxxx