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Just diagnosed with DCIS

35 REPLIES 35
wilsbury
Member

Re: Just diagnosed with DCIS

Yes it does, thanks. DCIS, Cavity shave - terms I didn't know last week! How things change! I don't think I'd go for any cosmetic stuff, I think I would just like some idea what to expect. I'll take your advice & ring the breast care nurse tomorrow. Thanks for talking to me! X
pinky3
Member

Re: Just diagnosed with DCIS

I think it is very individual. I asked my surgeon and he just gave me an approximate weight of tissue to be taken. It also depends how many margins were involved. My last surgery only involved one margin and the rest was given what was called a cavity shave. Perhaps your breast care nurse could tell you how much is planned to be taken. For me one side of my breast is now noticeably smaller, but I am quite happy with it and the scar, though quite long is already fading nicely.

I have heard of people having lipofill or partial reconstruction after wle and this might be a future option that you could look into.

Hope this helps.

wilsbury
Member

Re: Just diagnosed with DCIS

Hi Pinky 3, I was wondering if you know how much healthy tissue they take away when 'clearing the margins'? I have a small bust to start with, only a B cup, & the biopsy alone has made it look quite different.
Then I think that I shouldn't be worried about looks when other people have far more to cope with. Messes with your head, doesn't it!! 😕
Jan-65
Member

Re: Just diagnosed with DCIS

Hi Pinky3

 

We seem to be the same, I have also decided if margins not clear this time I will also have the MX. Still worried though that I should have gone for this option in first place.  Think I'll have a chat with helpline on Monday. 

 

Keep in touch, best wishes

wilsbury
Member

Re: Just diagnosed with DCIS

Hi Jan65
I don't think I'd rely on anyone's gut feeling, especially if it's high grade. I'm sorry that you're not getting the information you need too. I'm very new to all this & can't really give advice, but if a panel of doctors has made a recommendation I think I'd go with them! Hope everything works out for you, don't really know what else to say! X
pinky3
Member

Re: Just diagnosed with DCIS

Hello Jan65

I really understand how you feel. I am really hoping for clear margins this time. I decided to have a further wle but was also offered mastectomy with immediate reconstruction. I went for the wle possibly followed by radiotherapy as a mastectomy is such a big step to take. I have now accepted that if the margins are not clear this time I will have a mastectomy with ld reconstruction. I hope your surgery goes well, the decisions and waiting for results are tough on us all.

Jan-65
Member

Re: Just diagnosed with DCIS

Hi Wilsbury/all others

 

Sorry to hear your hubby isnt supportive, men often find it difficult to talk about illness (unless its them of course)!  I also have DCIS which is a high grade, I have already had a wide local excision operation 3 weeks ago but unfortunately they have not got clear margins and I am due to have another on 9th July.

 

I am now very worried I have made the wrong decision about not having a mastectomy, dont get me wrong I dont really want one but I have read that with a high grade there is much more of a chance of reoccurance or it being invasive if it does come back.  On the other hand I have also read that having radiotherapy after WLE is as good as having a mastectomy!

 

My surgeon is not big on giving information out and I only found out this week it is high grade, he says he believes a mastectomy is not necessary in my case and his gut feeling is he has got out all the dcis but the panel of doctors that review each case believe he should take another cm from the posterior just to be on the safe side.   I was happy with this information but the more I think about it makes me wonder if I am doing the right thing.

 

Was hoping for some other opinions.

 Thanks in advance.

 

Take care everyone

wilsbury
Member

Re: Just diagnosed with DCIS

They've just said I won't need chemo or radiotherapy after the op as long as they get clear margins. They couldn't get the cells with the needle biopsy as they are too far back towards the chest wall, although the wire-guided one worked, so hoping it won't cause problems.
Hope you are ok this week while you wait for results!
pinky3
Member

Re: Just diagnosed with DCIS

I should of had the results this week but they were not back from lab, so have to wait another week!

Won't be long now until your next surgery, I really hope you get clear margins this time and can move forward. Have they told you about other treatments yet?

wilsbury
Member

Re: Just diagnosed with DCIS

Thanks for your reply, it makes such a difference to talk to someone who knows what it's like! I don't want to be fussed over but I would like a bit of understanding if not support!
When will you get your pathology results? I had to wait 3 weeks for the results of the wire-guided biopsy & that was stressful too, especially as I'd picked up the vibes that there was a problem.
Lucy_BCC
Member

Re: Just diagnosed with DCIS

Hi wilsbury and welcome to the BCC forums

Along with the support here please feel free to call our helpliners on 0808 800 6000 to talk things through, lines are open weekdays 9-5 and Saturdays 10-2

Here's a link to further support ideas and information which I hope you will find helpful:

https://www.breastcancercare.org.uk/breast-cancer-services

https://www.breastcancercare.org.uk/breast-cancer-information/about-breast-cancer/primary-breast-can...

Take care
Lucy BCC

pinky3
Member

Re: Just diagnosed with DCIS

Also forgot to say please feel free to ask any questions.

pinky3
Member

Re: Just diagnosed with DCIS

Hello Wilsbury

I am sorry to hear that you need further surgery.

I have been in a similar position and have had 3 surgeries and I am now waiting for pathology results.

On a positive note I found the last two surgeries a little easier partly because I knew exactly what to expect.

Perhaps your husband 's way of coping is to behave as if it's nothing to worry about, certainly I have had people react in that way. 

There is plenty of advice and support on the forum so keep in touch.

 

wilsbury
Member

Re: Just diagnosed with DCIS

Hi, first post so a bit nervous! Just diagnosed with low grade dcis, surgery to clear margins on 30/6. Feeling very mixed up, grateful that it's been diagnosed early but worried about another op on top of a wire-guided biopsy that's still v sore! Husband is not at all understanding, just need to talk to someone who is!!!
Billan
Member

Re: Just diagnosed with DCIS

I really thank all of you for your supportive advice.  I will be seeing my doctor on 30th May at which time I will know whether my margins are clear.  And yes I was told I will need about five weeks of radiotherapy.  At the moment I am into my fourth day of surgery and I discovered that I have a squishy sound when I move my breast - like there is a collection of fluid inside.  I freaked out and called the nurse who told me that the body takes time to absorbe the fluid so I should not worry and give it a couple more days.  I am guessing this has happened because I have large breasts (size 40) and hope that it will pass and that I dont have to have any more surgical procedures.

 

With renewed thanks to all of you.  Will keep you informed.

Billan

lazy_jane
Member

Re: Just diagnosed with DCIS

Hi Billan It's a hard decision one I had to make, I kept thinking if I go with a mastectomy and reconstruction which is a big op how will I feel if they don't find any more cancer. So take your time asked lots of questions about different types of reconstruction and the percentage of the chance of more cancer being found.

Yvie178
Member

Re: Just diagnosed with DCIS

Hi Billan
Am 12 weeks post mx and implant recon following diagnosis of high grade dcis 5cm in spread and also behind nipple. Had no option but mx. Which was skin sparing but lost nipple. It's not a walk in the park but it's doable. If you want any info happy to help,
Kestrel63
Member

Re: Just diagnosed with DCIS

Hi Billan, I was diagnosed with DCIS last Sept and had WLE in October . Fortunately my margins were clear first time. I also had 15 sessions of radiotherapy due to it being high grade , however my oncologist said it was a belt and braces approach , so I went along with her recommendation. It seems like a long process but it is all doable . The worse part for me is the moving on after all treatment has finished. Good luck and if you want to ask any questions please feel free. Take care xx
pinky3
Member

Re: Just diagnosed with DCIS

Hi Billan

I am in a similar situation to you. I have had two WLE's. Both have been unsuccessful in getting clear margins. I have been offered a further WLE or Mx. I have not yet decided which to have, it is a difficult decision to make when the cancer is not invasive and no one can tell you if it ever will be.  Hopefully you will be lucky and they have caught it all first time. Have you been offered radiotherapy to have once you have clear margins? 

When you get your results if you need further surgery I am sure you will be given plenty of time to think before making a final decision. 

Feel free to ask me any questions.

 

 

princessbear
Member

Re: Just diagnosed with DCIS

Hi Billan, I am sorry you have found yourself in this situation, there are so many things to consider and think about, and many of them are the what ifs. I had my WLE four weeks ago and thankfully for me my margins were clear. I am now waiting for radiotherapy to start in a few weeks. Only you can make the decision that is right for you with guidance from the professionals. Do you know what grade your DCIS is?  Mine was high grade so radiotherapy is usually recommended as far as I understand once clear margins have been achieved to the rest of the affected breast.However, each case is different. My surgeon recommended radiotherapy because the dcis was high grade but also because of my age. I am 44. To me losing a breast would be the last resort with still further surgery of reconstruction to deal with, I feel the emotional impact would be much greater and the recovery longer and harder.

I wish you the very best for your results. I found waiting for results particularly difficult and the relief of clear margins overwhelming. It took a few day for it to sink in as I had prepared for the worse.

Good luck and let us know how you get on.

Take care xxpb

Billan
Member

Re: Just diagnosed with DCIS

Hi Everyone

 

I am new to this forum and have been reading all your supportive comments.  I was diagnosed with DCIS two weeks ago and have just had surgery (WLL).  I am fine apart from soreness and a little bit of pain.  My doctor says that after the results of the sample removed, if the margins are not clear, he will do another surgery to remove more.

 

I am thinking that if I have to do a second op then I will go for an mx but my doctor thinks that this would be an overkill for the kind of cancer I have.  Have any of you been in this situation andif so I would appreciate your views.

 

Would really appreciate your views.  Thanks

Jo_BCC
Member

Re: Just diagnosed with DCIS

Hi Jan65

 

Welcome to the Breast Cancer Care discussion forums, you've come to the right place for some good, honest support from the many informed users of this site.

While you are waiting for replies, I have put for you below the link to one of BCC's publications you might find helpful. Also our helpline team are just a free phone call away, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2

 

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/ductal-carcinoma-situ-dcis-...

 

Take care,

Jo, Moderator

Jan-65
Member

Re: Just diagnosed with DCIS

Hi everyone

So glad I saw this forum misery loves company as they say! lol, I like you was diagnosed with DCIS 3 weeks ago, the doctor originally told me it was a papillioma which is a benign tumour and I would need a small operation to stop the bleeding from my nipple, I had the op and everything was great. I had to go back for a check up and results of the tissue the sent off for analysis and was fully expecting him to say off you go your fine, so when he said breast cancer I nearly fell off my chair.

 

I was supposed to have an MRI last week before we discuss surgery options but I am a larger lady and when they pushed me into the scanner I could feel the machine on my back and I freaked out and had a panic attack so had to be pulled out, so now just waiting for another scan date in a larger machine.

 

Been reading a lot about the condition, surgery, radiotherapy etc and there is a lot to think about so as soon as I am a bit further down the road I'm sure I will be back with more questions, in the meantime if I can help anyone out even if its just to have a moan or chew the fat I would love to be some help.

princessbear
Member

Re: Just diagnosed with DCIS

Hi jake1, sorry to hear of your diagnosis. I have felt the same as you. I am 44 and have always been breast aware, I don't smoke, drink very little, am fit (runner) eat heathly foods. I had my children late 20s / early 30s and breast fed them both for 11 months. I read the risk factors for cancer and went through the list, no, no, no, no. I feel like I did everything right.why me? I said this to my surgeon and she touched my arm and said 'you didn't do anything wrong'. I keep playing this over in my head when I feel low. I guess its human nature to look at our past mistakes and learn from them and move forward but we can't do this with cancer. Cancer isn't a past mistake, its a disease that we are getting very good at curing these days and we have to focus on that. DCIS is the earliest form of BC so we are 'lucky' its been found before its invasive. its incredibly hard but I am trying to focus on that and praying nothing has changed when I get my post op results. Waiting for results and surgery I found to be incredibly draining, but this forum has helped a lot knowing you are not alone in all this. Take care xxx

jake1
Member

Re: Just diagnosed with DCIS

Hi all, this is so new to me and is my first post.  I was diagnosed with DCIS a week ago, had a biopsy then MRI and see the consultant again next week but the roller coaster I am on is gut wrenching.  Telling people is hard, and I only told my close family and very close friends.  I keep thinking what have I done to cause this, I have never smoked, hardly drink, exercise to the point of competitive level and watch my diet so carefully so I am in a state of shock, I keep thinking they have made a mistake.  I have been looking at things about diet to beat breast cancer, alkaline diets, alternative therapies and am so confused not sure where to turn next and all the time waiting to see what the consultant has to say about my cancer and the way forward.  I have never been on a forum but reading what everyone has posted I feel less alone than I did an hour ago but I too feeling so so lost.

princessbear
Member

Re: Just diagnosed with DCIS

Hi lyla, so sorry to hear of your diagnosis. I am recovering from surgery which I had on Tuesday. I completely understand how you are feeling about telling people. I only told my family and closest friend initially. I was having trouble taking it all in myself and telling people was much harder than I thought. I gradually told some friends and told a few more people just before going in for surgery. The whole thing is very scary but I have amazed myself really at how I have just got on and coped with it. You do find the strength from somewhere. This forum has helped enormously because there are lots of amazing ladies on here at different stages and their experiences all help to prepare you for what's to come.

Ask any questions, and know that you are not alone in how you are feeling.

Take care. Xxx

lyla
Member

Re: Just diagnosed with DCIS

Oh god I'm so glad to hear someone feels like me. I was diagnosed on Tuesday. ..i can't even remember what they called it so don't know what DCIS means but i have grade 1 lump slow growing. I haven't told anyone I'm so worried about different reactions and the people I've hinted it to. ... That I'm not well seem to be off sunbathing and saying 'here for you babe' in texts! This is too much right? ! If love to chat abs hear from you. ..
Isla
It's starting to sink in here too by the way. Im happy to talk because I feel just like you. I don't know where I am supposed to go. .. To meet others. ..
my sister mer a big group but. ..I don't know how.

patricia4
Member

Re: Just diagnosed with DCIS

I have been diagnosed since about that time too, I have started a new thread with my thoughts.
Its such a rollercoaster, and I have good days and bad days thought wise, the goal posts keep changing. Sometime I just think I am not strong enough for what I am about to embark on.

Wish you well with your journey.  It is best to try and stay positive, but I know its not always possible.  Because I am going down the immediate diep route reconstruction and reduction, I went along to our local BRA awareness evening, and could see people that have had their ops, they spoke so positively and open it as really uplifting.

Take care x

princessbear
Member

Re: Just diagnosed with DCIS

Hi coco53, I'm wondering how you are? I think its all starting to sink in a bit now trying to remain positive but generally feeling low with the enormity of what's a head. I hope you are doing OK. Take care xxx

princessbear
Member

Re: Just diagnosed with DCIS

Thanks Yvie178 for your reply. I saw the surgeon yesterday. Was really hoping he was nice and that i got a good feeling. He turned out to be a she and she was just lovely. Turns out I have high grade dcis and will also need radiotherapy after op. Just praying op goes well and they get clear margins. I am able to talk coherently about it all and then suddenly wham last night it just hit me like a ton of bricks and I really sobbed...which I realised i hadnt done since the day I was diagnosed. Did feel better after. I have been back to work today which was initially hard and emotional seeing people who know, but actually proved to be a good distraction. Although I think it was probably my least productive day ever! I'm still having difficulty with it all sinking in. I can hear myself telling people and it's like...wait a minute... Is this real? WLE set for mid April so I just need to focus on getting through that and taking each day as they come.

I do hope you are doing well following your surgery. It has been a real help to be able to talk to people on here. Take care x

Yvie178
Member

Re: Just diagnosed with DCIS

Hi ladies was where you are in January so know how it feels, everything happens so quickly from the initial diagnosis and you are swept along with it. My mx was on 13.2 and am still recovering but slowly getting there. My worst times were at night when everyone else was sleeping and I couldn't! Had a few meltdowns then! Do take advantage of all the help you can get on this forum - I have found it immensely helpful especially talking with people going through the same type of mx and recon. It's all new and unknown to us so any questions you have just ask! Take care xxxxxx
princessbear
Member

Re: Just diagnosed with DCIS

Thank you Coco53. I appreciate you replying. I I am also finding that when I'm on my own its much harder, trying to keep busy which helps and I feel fine and in control, then all of a sudden its back. I guess its normal to have these huge ranges in emotion. I am trying not to fight these feelings but just go through them and except them for what they are. I hope you have a better day today and wish you all the very best. X
Coco53
Member

Re: Just diagnosed with DCIS

Hi, feeling the same for me so wanted to reach out to you. I was diagnosed a week ago and so much has happened so far. It is sinking in for me but first night on my own since and low tonight. I have found feelings coming in waves: fine for ages and thinking I'm getting to grips with it then a wave of emotion hits me.
princessbear
Member

Re: Just diagnosed with DCIS

OK, thank you.

June_BCC
Member

Re: Just diagnosed with DCIS

Hello Princessbear

 

Welcome to the forums.

Whilst waiting for replies to your post maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open again in the morning and normal hours are Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

 

best wishes

June, moderator

princessbear
Member

Just diagnosed with DCIS

Hello, I am completely new to this forum, but I guess everyone was at some point. Trying to adjust to life since being diagnosed on Wednesday. Everyone has been so supportive but I don't want to keep burdening people with how I feel, which is all over the place. Thought it might be helpful to be able to chat with people who are going through the same thing. My prognosis is good and I know I need to focus on that but feeling bit lost tonight. I think its just starting to sink in.