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Treatment for DCIS

24 REPLIES 24
morrisbird
Member

Re: Treatment for DCIS

I'd endorse what Belinda has said.  I had DCIS 6 years ago and had 2 WLE to remove it all.  But it appeared again at my annual mammogram last December in the same breast.  I had a DIEP Mx on that side and, although I am still in the early stages of recovery, it has gone better than I had hoped and also have had confirmation that they didn't find anything else in the tissue or lymph node.  This means that I don't have to have chemo or medication - radio was out as I had that before.

 

Julia - neither time did I have a lump or any symptoms.  Both occurrences were picked up on a mammogram and confirmed by biopsy.

GiulianaB
Member

Re: Treatment for DCIS

you mention you had no chemio or radio. Could you tell something more?

 

how big was the lump and what stage was it?

 

Thanks

 

Julia

JS
Member

Re: Treatment for DCIS

Hi Pinky, hope you are doing really well and the soreness has subsided. I have just finished the radiotherapy today after my 3 WLEs and it has been fine. The radio girls and boys (as I call them) couldn't have been kinder and more thoughtful and I left tonight armed with cooling gel, in case of soreness, info on E45 cream, in case of dryness, and reminders about SPF 50 sunblock! Really just wanted to let you know that, like yours, my treatment went smoothly and also to reassure anyone out there just about to start. Thanks again for your support, it really helped knowing I wasn't the only one. Best wishes, JS
pinky3
Member

Re: Treatment for DCIS

Thanks for letting me know. 

I am really happy for you 🙂

It is such a relief when you get the results you wanted, I remember I couldn't stop smiling for days!

Best wishes to you for a dcis free future 🙂

JS
Member

Re: Treatment for DCIS

Hi Pinky, just to let you know have had the third WLE and same result as yours. Thanks so much to you and others on the forum for your support. Best wishes, JS
JS
Member

Re: Treatment for DCIS

Hi Lisa

Thanks for sharing your experience and your good wishes. Despite the bigger op with longer recovery time, hopefully you're feeling a bit better each day and have peace of mind for your health. Best wishes, JS

pinky3
Member

Re: Treatment for DCIS

 
FizzB
Member

Re: Treatment for DCIS

Hi JS, sorry to hear you are going through this. I had a very similar situation last October; a "nothing to worry about, erring on the side of caution" WLE after a routine mammogram (annual family history - I am only 44), followed by another after DCIS diagnosis, followed by either further WLE option or mastectomy as margins still not clear. I opted for bilateral mastectomy with immediate LD flap reconstruction which too place three weeks ago.
It was all done very quickly, with little time to think, and despite still recovering from what was a much bigger op than I had been prepared for, what I do have is peace of mind that the threat of breast cancer is now gone. After four years of being called back for post-mammogram core needle biopsies, long term this was the best option for me.
Obviously my experience doesn't change what you're going through, & I wouldn't dream of saying that is the right way for everyone. What I would say is that it is import at to do what is right for you. Mastectomy/reconstruction was a lot bigger op than I was prepared for, and the recovery has been longer than I had hoped (initially I had wanted implant only for the recovery time, however after consultation with my PS LD flap appeared to be a better long term option), but for peace of mind this was best for me.
Very best of luck with your treatment, I hope all goes well for you. Lisa
JS
Member

Re: Treatment for DCIS

Hi Belinda

Many thanks for your input and support, it's been so helpful hearing others' stories. I'm really glad the DIEP flap has worked out well for you.

Best wishes x

belinda64
Member

Re: Treatment for DCIS

Hi JS.
I was diagnosed with intermediate DCIS back in August, I had no symptoms whatsoever. There were 3 patches so I had a mastectomy with immediate DIEP flap reconstruction.
You can't tell with a bra on. I have no nipple yet and probably won't bother. I feel fine, the side of the breast is still a bit tender and the tummy area a bit too but am back at work full-time, back at gym and have no regrets. Was lucky enough not to need radio or chemo. So what I really want to say is that a mastectomy sounds really drastic but actually, it can work out for the best. Good luck with whatever you decide xx
JS
Member

Re: Treatment for DCIS

Hi Jan

Thanks for your post. My surgeon says that after WLE + radiotherapy there is a 10-12% chance of the DCIS returning elsewhere in the breast, I reckon that this 88-90% in favour of non reoccurrence is very good odds! I have also done quite a bit of research into DCIS. There are some good websites - if you google DCIS support UK or DCIS treatments you can read some useful information. I tend to stick to the UK websites. If it does reoccur as DCIS there is the comfort of knowing that it is contained and non invasive and treatment is still available, albeit as a mastectomy. Even if it returned as a more serious type treatments are available. Of course you are concerned about what might happen, you have been through a hugely worrying time which must have knocked your self confidence for six - it certainly has with me - and it takes time for such a shock to the system to settle down, both physically and psychologically.

I wish you all the best.

JS

Jan-65
Member

Re: Treatment for DCIS

Hi,

 

Sorry to hear your diagnosis and hope you will feel comforted reading others replies.  It's funny to read your thread as I was just thinking about whether or not I have made the right decision in having lumpectomy rather than a mastectomy.  I had high grade 3 cm dcis in one breast and unfortunately due to where it was I lost my nipple and areola.  I was totally deverstated knowing this was going to be my fate and thought I would look like a circus freek etc but was and am grateful everyday my cancer was non invasive, however 2 WLE later plus radiotherapy, I am now fully recovered with the exception of the daily electric shock type pains but I have been questioning wether I made the right choice.  I was adamant at the time I would not lose my breast but ever since I worry about whether it will come back and will it be a more serious case.  I know I shouldnt worry about something that might not happen but I suppose thats my point, if I had gone ahead with the mastectomy and reconstruction I wouldnt be worried now would I?

 

I can only say that I did what was right for me at the time and will have to live with my decision but if it happened again I would seriously consider mx. 

 

Very best of luck to you what ever decision you make, like me will be right for you at the time.

JS
Member

Re: Treatment for DCIS

Hi drdspg

 

Thanks for your post and your good wishes.  I am so sorry to hear about your experience, the diagnosis must have been a shock diagnosed during routine surgery, but thank heavens it was found and it sounds as if you made a really sensible choice.

 

I have talked things through with my breast cancer nurse but she does seem to echo everything the consultant says. I understand why they are recommending the mastectomy but would be really upset if afterwards they tested the tissue and told me there had been no DCIS elsewhere in the ducts.

 

At this stage I don't feel ready psychologically for a mastectomy and think will go for the third WLE as they have given me that option, and as Pinky said at least I will have given it a final chance.  My husband and friends have been great, and it helped me a lot just putting it all down in my original post on the forum, sorry it was so long and rambling!

 

Best wishes, JS

drdspg
Member

Re: Treatment for DCIS

You have been through such an ordeal. So sorry to hear about it. My diagnosis was not standard as the cancer was found during routine surgery and was bilateral. Personally, I wanted to maximise the chance of getting rid of it and went for the bilateral mastectomy that was recommended. Everyone is so different in the way they feel about which treatment package to take on. I also had chemo. A good friend of mine was diagnosed at the same time and she elected to have the surgery but not the chemo.
Have you talked with friends and family? Have you been assigned a breast care nurse that you can talk to? It's really tough having to make these sorts of decisions when your head is spinning. Some people even go for a second opinion.
There are no ideal solutions, but do give yourself all the chances you can. Really wishing you all the best.

JS
Member

Re: Treatment for DCIS

Thanks Pinky, probably in a week or so, will let you know after. Really appreciate your support. JSx
pinky3
Member

Re: Treatment for DCIS

Just wanted to wish you good luck for your next surgery 🙂

Please let me know how you get on

Best wishes

JS
Member

Re: Treatment for DCIS

Hi Pinky, same as me, low to intermediate diagnosed from the biopsy but the remaining bit is apparently high grade. Good news yours not invasive, think also same as me. Fingers crossed for third WLE, think must be worth a shot. JS x
pinky3
Member

Re: Treatment for DCIS

Hi Js

 

Mine was a mix of grades, initially low grade but progressed thereafter!  My core biopsy just showed ADH so I was a bit surprised that the further the surgery went the worse it got. At least no invasive cancer was found 🙂

X

JS
Member

Re: Treatment for DCIS

Hi Pinky, JS here again. Do you mind me asking you whether your DCIS was low, intermediate or high grade? Thanks x
JS
Member

Re: Treatment for DCIS

Hi Pinky

Hi Pinky

Thanks for the info about the radiotherapy which I am quite prepared for. Your thoughts match my own: if the third WLM doesn't clear all the DCIS, at least I will have tried. I have researched a bit about DCIS and it seems that opinions vary and they don't know why it progresses in some ladies but not in others. I can understand why breast surgeons recommend mastectomies - mine says it is effective in 98% of cases - but they don't always consider the emotional effect. Anyway, I am so grateful to you for taking the time to talk me, and telling me about your experiences, it has helped so much. Best wishes, JS x
pinky3
Member

Re: Treatment for DCIS

Hi JS

 

I am pleased to hear that the plastic surgeon is listening to your concerns. The good thing about having a last go at Wle is that if you still don't have clear margins you will know that you did everything you could to save your breast and it may make accepting a mastectomy easier.

 

I had radiotherapy afterwards, which was fine. A bit of a pain going to the hospital everyday for weeks and some temporary soreness ( a bit like sunburn) The only lingering issue is some pain in my breast but this is gradually improving. I do not currently take tamoxifen. 

 

Best wishes

Pinky

X

JS
Member

Re: Treatment for DCIS

Thanks to June for the welcome and to Pinky3 for your experience and I am so glad it was third time lucky for you. I too feel I would rather keep my breast, albeit smaller, and maybe a funny shape. The plastic surgeon told me he could always do a reconstruction later on if the third WLE was successful but I don't think it would bother me that much. It's already a little smaller. He certainly seemed to grasp how unhappy I was with the thought of a mastectomy and is going to report back to the breast surgeon. Did you have radiotherapy after the successful WLE? Thanks again for your response. JS x
pinky3
Member

Re: Treatment for DCIS

Hello JS

 

I was in a very similar situation to yourself. 

In the end after much soul searching I decided that I did not want to lose my breast. I chose to have a further WLE as a last and third attempt at getting clean margins and luckily for me it went well. My consultant was really keen for me to have a mastectomy but Like you the thought of losing my breast was a step too far.

My BCN said that as I had doubts about choosing mastectomy that I was right to try WLE again.

 

It is important that you do what feels right for you,  please don't feel pressured into making a decision you will have to live with for the rest of your life.  I was told my breast might not look good after three WLE's, but I am pretty happy, it is slightly smaller and I have a long scar from my side to the nipple, but the upside is that it still feels the same as before.  I am sure there will be ladies who chose or indeed had no choice but mastectomy who will be able to give you some good feedback on their experiences.

 

Please feel free to ask me any questions and I will do my best to help.

 

Pinky

Xx

 

June_BCC
Member

Re: Treatment for DCIS

Hello JS

 

Welcome to the forums, this must be a very difficult time for you but you have come to the right place for support from our experienced users who I’m sure will be along to support you soon.

In the meantime 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 Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

 

Best wishes

June, moderator

 

JS
Member

Treatment for DCIS

Hi everyone, I was diagnosed with DCIS in the left breast in December 2014. My symptom was a minor watery discharge in September for a few weeks and my GP referred me to a consultant straight away. At the first consultation I had the standard mammogram and ultrasound, nothing showed up and I also had no lumps. They suggested an MRI but all the time were reassuring me, the words used were "just to be on the safe side, belt and braces". When I asked the consultant if she had seen this sort of discharge before she said she would be a lot more worried if the discharge was white or milky looking. I was just about to go abroad for three weeks and the MRI unit had no appts until the day I was due to fly so I checked whether I should cancel my trip and the consultant said "Of course not". On my return from abroad I got an MRI appt for mid November and this showed up some white calcification. I had another ultrasound and then a biopsy and eventually got the diagnosis of a 5-6 cm area of DCIS in early December. What upset me was that the consultant continued to reassure me throughout - they had tested the discharge and confirmed it contained no cancer cells, even called me to say that the biopsy was clear but they were going to check at a deeper level(?) - this eventually led to the diagnosis. I would rather have waited for the diagnosis rather than being given false hope all along. Anyway a local wide excision was recommended. By this time it was near to Christmas and my consultant was going away for three weeks so I asked if she could transfer me to a colleague and have the procedure carried out straight away, which she did. I had it done on 22 December but the surgeon took only 4.5 cm and there were some DCIS cells left in two quadrants. I had a second wide excision done on 12 January which cleared one section but not the other, he said there was a 1 to 1.2cm margin of DCIS superiorally. The surgeon has now given me three options: a third excision, which he says would leave the breast disfigured, radiotherapy + Tamoxifen for five years or a mastectomy. He and the team are strongly recommending the mastectomy (or full clear out as I call it!) and I did see a plastic surgeon yesterday to discuss the reconstruction options but I just cannot get my head around losing the breast, particularly because of the resultant loss of sensation and the nipple. If I did go for it I would choose an implant I think because it is a shorter op with quicker recovery time and other options could always be done later. This nightmare has been going on for five months and I am desperate to get it sorted, put it behind me and get on with my life. Has anyone out there had the same type of experience as me, ie the reassurances, the time delay etc? Every time I think about a mastectomy I feel sick to my stomach. Thank you for reading this. JS