Anyone with DCIS who hasn't had radiotherapy??

Hi. My case was exactly the same. I too fell into the intermediate bracket. I didnt know what to do at all and was so confused. I spoke with my own GP who said that she felt it was better to have the treatment as I am only in my forties, then I would know that I had done everything to get rid of it and could get on with life. I was referred to another oncologist for a 2nd opinion, and he told me in clear terms that I should have the treatment, as cancers can come back and are not always visible on mammograms and can be picked up late.

I started the treatment in January and finished a few weeks ago. Had five weeks of it. Have managed very well and am glad now that its all finished and done with.

I do hope you come to a decision that is right for you. I know it is hard but you will get there. All the best.

Kathy

I had a wle in Dec 2004 at the age of 41 for high greade DCIS. Then a further wle in Jan 2005 as they hadnā€™t got clear margins. The oncologist said that I did not need radiotherapy as there were no cancer cells after the second op and that the radiotherapy would do more harm than good.
In Oct 2009 they found that the DCIS had recurred and I had a mastectomy and TRAM reconstruction in Dec 2009. Again it was found to be high grade.
I will always wonder if it would have come back if I had had radiotherapy - however I would not have been able to have this type of recon if I had as there would have been too much scarring.
It is very hard to know what to do, I know I just wanted to make sure it was all dead and gone.
Good luck on your journey whichever route that takes

Hi
I am 41 and I had widespread DCIS and so had a mastectomy and back flap recon in december and had no other form of therapy other than visits to the consultant. I had my lymph node biopsy done as a day op before major op and all was clear.
I believe I donā€™t need any other treatment as they removed all my breast tissue, I did have to have a second operation as they still found some but after that all clear! (I hope)
I suppose as well, does anyone ever really know? Good Luck with it all and take care. Debbie

Iā€™ve done a lot of research into this as I had a small area of DCIS and the risks of side effects from radiotherapy outweigh reduction in recurrence if DCIS is low grade, small and with good margins and benefits v risks are doubtful if some of those factors are present ie small, high grade but with good margins. In my case I was given one measurement for margins and told another 10 days later. Now I donā€™t know what to do at all!

Hi I was dx in nov 09 with dcis I had op early dec but margins not wide enough so had another op and they got a clear margin its all a waiting game (not good as I like to get things sorted now) so this seems to be going on for ever yesterday had appointment at st lukes cancer centre Guildford(that was scary made me reaise yes I am a cancer patient) parking horrendous by the way, anyway thought I was going to get marked up for rads but it was just for a chat have to have a CT scan first so I was told rads wonā€™t be started approx another month oh my god just want to get the rads done been told 5 weeks rads mon-wed-fri! anyone else had this.

By reading these posts I seems a little unusual as I am 60 on arimidex and having rads but bring it on I say rather have the rads for huge peace of mind.

Had a bad day today yesterday was just to much will I ever wake up and think of anything else but cancer.
Went for a walk with the dogs which did help a little.

Take care love Linda xxx

Hi Linda
I also hope I will one day wake up and not think cancer although I am assured it will happen. I was dx Feb 2010 with DCIS G3 and was told I would have aWLE and SNB and a few zaps and I will be fine.I am going in for op on 31st March next Wed. I really really want this thing out but the waiting goes on and on. Good days and bad mostly bad. I am in your age group and yes walking the dogs along the beach is my feelgood therapy. I hope you soon get on your rad treatment and this horrible place we are in will get brighter.
Facelady xx

Hi facelady what area are you from? Iā€™m having my marking up done the same day you have your op. I had to have 2 ops to get a wide enough margin and having Arimdex and rads but another lady in our age range only had the one and no other treatment so I wish you all the best for the 31st.

Linda x

Oh facelady I didā€™nt mention how sweet your dog is I have a tibetan terrier who is 11 now and the little bichon which is in my photo they are just great and yes when out with them it is calming.

Linda x

Hi Linda I am from East Sussex in a place called Cooden Beach. I am having the radioactive injection on the 30th and on the op day the guide wire will be inserted before surgery so she knows where she is going as my mass cannot be felt.Hopefully she gets it all in one go.
Mitzy my yorkie x terrier is 13 and is like a young pup, the other one is a nutty lab she is 9 and not so nimble. Please keep me informed re your tx. and I wish you all the bes.
Thanks for talking to me.
Cindy x

Hi Everyone.

I had DCIS grade 2,and had mastectomy in Oct with reconstruction.It was found i had micro invasion so radiotherapy was recommended to me and Tamoxifen, iā€™m 47yrs.Iā€™ve now completed the radiotherapy with little side effects,and am pleased that i was given this option. It is also my understanding that having radiotherapy is an added preventative measure against reoccurance,and you are getting ā€˜gold standardā€™

Debs xxx

Hi Everyone,

I to had DCIS - extensive and had mx in oct with immediate diep recon. Pathology showed widespread disease with clear margins and lymph nodes. I was advised that it was not necessary for chemo or rads and that the risks of tamoxifen outweighed the benefits for me. I just hope that the MDT made the right decision for me, I guess I will just have to wait and see but may well bring the subject up again at my next appointment as I have a new consultant.

Maggie

Hi all of you,

I had DCIS 5 years ago and made the decision to have a mastectomy. Iā€™d been offered excision followed by Radiotherapy but couldnā€™t face it. The doctor said that with a mastectomy, and clear sentinal node biopsy, I would not need radiotherapy. Thar was 5 years ago and I go for my 5 year mammogram next week! Wish me luck.

Just as an update, Iā€™ve now been told I have some calcification on my other breast so they want to ā€œkeep an eye on itā€. Hopefully, thatā€™s all theyā€™ll need to do. Good luck to you all.

Hi

I was diagnosed with DCIS in January 2004 in my left breast and just had a WLE with no further treatment. Was diagnosed with Triple Negative BC January 2008 in right breast with node involvement, nothing at all to do with previous diagnosis. Elected to have double mastectomy purely because I did not want to be lopsided, and my left breast was completely clear.

Nonny

I am glad you made this point, Nonny as I do feel that radiotherapy is believed incorrectly to be a safeguard against future cancer. It will only kill off cancer cells that exist after surgery and therefore will only be useful for that particular episode. Radiotherapy wonā€™t stop a new primary forming. Like you said, new cancer nothing to do with past DCIS, even if it had been in the same breast. I wish you well with your treatment and I would do exactly the same if in the same situation.

Hi Tilly I was very interested to read your post and sorry calcifications were seen in your other breast it just surprised me that they were just going to keep an eye on it!!! did you have the tests you had before? hope Iā€™m not being to nosey sorry if I am.

good luck love Linda x

I had a DCIS and had the operation , wire assisted yesterday and they let me come home 5 hours after. I am awaiting to get the letter to have the pathology results. The leaflet said people have radoptherapy but the surgeon said wait and see for thr results so that sounds like it is not inevitable and depends on each case.

Wire assisted surgery usually means that the lump is very small, so hopefully you wonā€™t need radiotherapy.

I had mastectomy due to high grade DCIS in November 2009. Too widespread (in breast) for anything but mx, but benefit was no radiotherapy or chemo (lymph nodes were all clear). I had reconstructive surgery at same time as mastectomy (LD flap). At 6 weeks I was signed off and have no further appointments until November 2010. New breast is a bit lumpy, but as it is a piece of my back, I canā€™t imagine it is anything serious.

Hi Annie,

That is good news to have an appt for Nov, but just curious, are you on Tamoxifen? as I had mx with immediate diep recon in Oct 09 and have no further treatment including not having tamox - just a load of other surgery, still going through that and next at hosp on mon.

Marjay