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Low grade DCIS

22 REPLIES 22
Coralie Stephney
Member

Re: Low grade DCIS

Hi Jill I did respond to a name change by email and it didn't happen so I don't mind now.
Jill1998
Community Champion

Re: Low grade DCIS

Hi Coralie,you can change your user name to something a little more anonymous if you want.Your past posts will show under your new user name.Its easy to forget sometimes that anyone can read our posts so it is better to be a little more anonymous really .
Coralie Stephney
Member

Re: Low grade DCIS

Hiya Steph thanks for the compliment on my name. After I did my first post the forum said I shouldn't use my real name but it's to late now. I've been feeling tired too after the microdochectomy. They say it's the anaesthetic. I'm getting sweats and aches too as I've had to cold turkey my HRT. Two girls at work have had mastectomy with radiotherapy and tamoxifen. One had reconstruction5 years ago, 10 years after her mastectomy. The other one hasn't. They look so beautiful and we'll sort you have that to look forward to. I would never have done a wait and see trial. You're doing the right thing. I will have one small boob and one larger but in the scheme of things, I'm lucky. I just want it all over with. Hugs to you
Steph J
Member

Re: Low grade DCIS

Hi Coralie 

It showed up on routine mammogram . I was called back to be told I had calcifications which needed further tests . I was told in majority of cases no further treatment required. The outcome was widespread DCIS hence the mastectomy , because had it of been contained to one area as it sounds yours is Id prob be in similiar shoes to you . 

Iv had quite a bit of fatique this summer but apart from that absolutely no symptoms at all . To say it was a shock is an understatement , and even now it seems surreal . But the prognosis is good and I have a lot to be thankful for . How Im going to feel after the mastectomy who knows ? Its radical but I could not have participated in the trial with it being widespread .... the psychological aspect I feel would have been too difficult . There are some other suspicious cells too , so what exactly did that mean ?? Suspicious of DCIS I was told and when I asked radiographer how common was it to have mixed cells she replied very common . I actually anticipated that she was going to say " oh quite rare " ...at that point I knew my only option was mastectomy and yes immediate recon . 

I understand your concern about how you will look and theres nothing I can say to make you feel better . I hope  that you will find comfort in the fact that the DCIS has gone . Anyway Im off to sleep now  its been a long day and hopefully these bloody night sweats arent going to terrorise me tonight . Thanks for chatting to me ...keep in touch . Steph xx

Ps . Coralie is such a pretty name ..dont think Iv heard it before . ( and Im not a weirdo ha )

Coralie Stephney
Member

Re: Low grade DCIS

Hiya Steph I understand what you mean now. I would do the same in your position. I saw the consultant with the intention to have a mastectomy because I didn't understand that there are different sizes of this DCIS. are you having a reconstruction at same time? I've been told they can't do anything to reconstruct the top of mine as I'm too firm and small. I think I'm going to look mutilated. How did you find out you had it? My sign was bleeding nipple. No show on the mammogram or CT Scan. I certainly wouldn't wait for this DCIS timebomb to go off. Your doing the right thing.
Steph J
Member

Re: Low grade DCIS

Hi Coralie 

My DCIS is 59mm x 25mm . To remove it would leave my breast half mutilated . I was offered the trial to leave it and monitor but that didnt seem an option to me because without taking the breast tissue to histology noone can guarantee me that there is nothing else there . Yes Im aware I may be faced with the fact Iv been overtreated but for me I can live with that far better than finding out in a year or so its become invasive because there was other undetected cells . 

Your 7mm will be far less invasive to remove I would imagine . I think I can imagine how you must feel ..its just the knowing that something is in there and you want it out ... I do feel   humble coming on this site when my diagnosis is what it is though but I guess  many of the concerns and worry about of it are the same for all of us .  Iv got to go now Im off for the dye today . Big hugs Steph xxx

Coralie Stephney
Member

Re: Low grade DCIS

Hi RJ7777 I hear you on that one. Good luck with your rads.
Coralie Stephney
Member

Re: Low grade DCIS

HI Steph I wondered why you opted for mastectomy for Low grade DCIS? I was going to ask for that when I went for my consultantaction but he threw his hands in the air and said it was overkill for me. According to the MRI I have 7mm in one duct. I'm praying that's it but worried, is it?
Coralie Stephney
Member

Re: Low grade DCIS

I hear you about being left alone. They've offered me to tattoo a nipple but can't reconstruction because I'm too firm and small. Thanks for the radiotherapy info. Good luck
blueash
Community Champion

Re: Low grade DCIS

I am at the hospital for less than 30 minutes broken down to say a 5 to 10 minute wait to be called, then 3 minutes to change into a gown perhaps another minute or so wait. Having the treatment takes about 5 to 8 minutes and most of that is them drawing on you and positioning you so you are just right. The actual zapping takes seconds, then you get dressed and can leave. You don't feel a thing while it is happening.

 

So far I am OK driving but it might get sore at the end I don't know.

 

 

I had Paget's disease and lost a nipple, I had it in June and now you can hardly see the scar (I have a starfish scar ask if that is suitable for you). They will tattoo me if I want to give me a nipple, I say if I want because after the op, the chemo, the rads and Herceptin for a year I might want to be left alone!

 

Steph J
Member

Re: Low grade DCIS

Hi Coralie 

Sorry I cant answer your question but it would be nice to follow your progress. I have low grade DCIS and Im having a mastectomy 5th Dec . Im having lymph node removal this Thurs to see if there is any spread , obviously that will determine if my treatment plan  remains the same . I was diagnosed back in Aug but because it was low grade I have had to wait but that was ok with me as many other ladies needed immediate treatment . Iv felt I should not have anything to complain about in the grand scheme of things .

I can understand some of your concerns about body image and I guess its scary and you wont know until after op .. Big hugs and lots of best wishes , hope all goes well . xxx

Rj7777
Member

Re: Low grade DCIS

Forest hill is that near brockley? My best friends brother is severely autistic so I do know some of the challenges you face. From what I've been told radiotherapy isn't that bad some tiredness and skin burn. It only lasts a few seconds and is painless I think. I'd have that over chemo any day!
Coralie Stephney
Member

Re: Low grade DCIS

Blueash how are you feeling after the rads? How long are you at the hospital?. Can you drive after?
Coralie Stephney
Member

Re: Low grade DCIS

I live in Forest Hill. I'm going to Guy'shospital on 5th for this nipple removal and WLE not sure what it is excactly. I had a microdochectomy to remove the duct to stop bleeding and test. Unfortunately they didn't get it all and I have to have wider margin. Not sure how I will feel after for going back to work as I'm a hairdresser at the end of my career, so I'm hanging on for as long as possible. I'm 65. My son is autistic so I want to try and recover asap. Scared about radiotherapy yet I'm lucky it's only 3 weeks. Just have to plan everything, cause of my son. I feel everyone else is so brave what they are going through. Good luck for your operation ladies.
Rj7777
Member

Re: Low grade DCIS

My operation is this thu 17th. Not sure about the appointments for rads. Where do you live? I live in Kent and they have been pretty good so far. X
Coralie Stephney
Member

Re: Low grade DCIS

Thanks for that as it is a worry.
blueash
Community Champion

Re: Low grade DCIS

I am having rads now and if you have a genuine reason they will try their best to fit it with your plans. I prefer the early morning but it is not vital and my latest one is 10.15 so they try to suit you if they can.

Coralie Stephney
Member

Re: Low grade DCIS

When is your operation rj7777? Will I be able to get the same time every day. I need to plan around my son who is autistic.
Rj7777
Member

Re: Low grade DCIS

I start radiotherapy in new year too if all goes well. Keep in touch. X
Coralie Stephney
Member

Re: Low grade DCIS

Thanksxx I've been given a date now. 5th Dec to remove nipple and 7mm of DCIS. Four weeks after will be radiotherapy for 3 weeks. He said I may have to have more off if they can't get clear margins. That terrifies me. I was on HRT so they can't do any reconstruction as I'm too firm. I will have one small and one bigger boob. They will offer me a tattoo nipple in the future.
Jill1998
Community Champion

Re: Low grade DCIS

May be worth reposting your question in the surgery section too Coralie .
Lizzy_BCC
Member

Re: Low grade DCIS

Hi Coralie, 

 

I am sure any users who have had experience of low grade DCIS will be along soon to share their experiences. In the meantime you can always call our helpline on 0808 800 6000 who will be able to chat through your questions and offer a friendly ear. The opening hours are below. 

 

Monday-Friday, 9am-5pm
Late opening Wednesday 9am-7pm
Saturday, 9am-1pm

 

Best wishes, 

 

Lizzy 

Coralie Stephney
Member

Low grade DCIS

I wanted to hear from anyone who has had low grade DCIS and had a positive outcome following nipple removal and radiotherapy? My microdochectomy showed I had early DCIS and the MRI showed 7mm. The plan is to remove my nipple where the bleeding first started and to follow up with radiotherapy. Had CT scan on Tuesday but she couldn't see it. Seeing consultant on Monday and wondered am I gonna look like a volcano breast? How was the recovery time.