Hi
I was diagnosed with DCIS in September I decided to have a mx, but still find it hard to be told that I don’t need any further treatment. If there is anyone one out there in the same situation I would like to hear your story.
Hi Suzie
I had a mastectomy in Oct last year and didnt have rads/chemo either as there was nothing in the lymph nodes.I had both DCIS and invasive too. Im on Tamoxifen for 5 yrs. Please try not to worry about this but I completley understand your fears. I was shocked to hear that nothing followed surgery-I -wrongly- thought cancer = chemo.
Chat things over with your BCN for extra reasssurance.
Cathie
Hi Suzie,
I was originlly diagonised with DCIS and was told op would be it too as was only grade 1. DCIS stays in the ducts and so when they operate, they can get it all if it isn’t a huge patch. Unfortunately, in my case, they found invasive cancer and so have to have rads and tamoxifen.
cathie is right though, talk to your BCN and she will make reassure you.
Good luck,
Wendy
Hi Suzie
I had a dbl mastectomy last March after being diagnosed with DCIS. I was given the choice of another WLE op and then rads; or a full mx and no rads, so I opted for the latter, which was recomended by my consultant. As the other lady said, because it is DCIS the cancer cells are only supposed to be in the ducts and havn’t learnt the ability to spread outside of the ducts, so once these are removed, then that is supposed to be the end of it. I hope so !!
There is also an information leaflet on DCIS on here somewhere which explains it all, I expect one of the BCC ladies will post the link on this thread shortly.
If I can help with anything else let me know.
Take care through your recovery.
Samm xx
Hi Suzie and welcome to the BCC forums
As Samm kindly mentioned, here’s a link to the DCIS publication which you may find useful:
Please also feel free to call our helpline where you can talk through your concerns with one of our team on 0808 800 6000, weekdays 9-5 and Sat 9-2.
Take care
Lucy
Suzie my mum had DCIS in 1995. No node involvement. She had a mastectomy and no chemo or rads. She is still alive and well today.
Debs
X
Hi Ladies,
I had widespread and very extensive DCIS. I had a mx and immediate diep recon and again did not need chemo, rads or even tamox as I have been told it will have all been removed during surgery and luckily there was no evidence of invasive disease in my histology. I too find it incredible that I don’t need anything else and have asked my team on more than one occasion, but they inform me that it has all been treated and I am on “surveillance” for the next 5 years for the remaining breast anyway. I have to trust my team as they have a good reputation being the Marsden.
I have just had my 3rd op to my unaffected breast so self checking is a lttle difficult at present time, but as soon as I can, will be checking myself regularly and will make sure I go to my annual mammo even though I hate them!!!
Hope you feel a little more reassured now, but please do speak with your bcn or the helpline.
Regards,
Marjay
Just want to add that you need to check the reconstructed breast. My doctor thought it was not possible to get cancer in a reconstructed breast, but I have now learnt that it is.
It is rare, and I was just unlucky - but if I had known it was a possibility I would have insisted on being referred back to the oncologist when I first found it, rather than accepting my doctor’s out of date knowledge. Mine is still primary BC with a good outcome, but I was shocked to think I could easily have left it.
Annie
Hi Suziex
Just spotted your thread had to stop myself shouting ME ME ME!
I’m 31 and had tender boobs and discharge from the right nipple, doctor referred me to breast care unit at hospital. In my first appointment they DX that is wasn’t just an infection and to be prepared for the worst…cancer. They confirmed DCIS from the biopsy but it was such a large area an MX was neccessary. I had MX 15th Dec and was confirmed to be high nuclear grade DCIS with no ‘invasive cancer’ found. The oncologist is happy with the margins achieved and no further treatment is needed. I don’t need to ‘go back’ until june2011. My BCN’s are a great support i speak to them quite regular and ‘off load’ Its all happened so fast.
It would be great to speak to so one in the same boat.
Take care Jo
Hi Suzie,
Just spotted your thread. I had mx for widespread dcis some nodes removed Jan 2009 with no further treatment, went for 2 six monthly checkups Aug09 & feb10 and then yearly check which is due next month have yearly mammo’s on remaining breast, did not have
reconstruction.
I to did feel apprehensive but releived when told no further treatment required, you can always call the Breast Care Clinic in between checkups if you have any worries.
Take care
Maggie.
Hi everyone, first time on here. Had diagnosis of 7 mm of intermediate dcis in November. Last week had excision and the dcis is much more extensive and now a mx is recommended. No evidence of invasive in the large excision already taken but I am still nervous something has been missed. I too have been told that mx will mean no further treatment and I find this very worrying as I am sure not all breast tissue will be removed as I see happened to one of the ladies in this forum. I would like time to think about this but feel I have to act quickly otherwise I might make my situation worse.
Hi Jaxmax
Im sorry youve had to join us. As i guess youve already read i had a MX in December along with a SNB due to DCIS. I’d never heard of DCIS before all this and didn’t really realise just how many different type of BC there are. All the feeling and concerns you describe are very familiar to me. Do you have family around you to talk openly with about just how you are feeling? Ive found my BCN very informative along with and the info and situations ladies on this site describe. I tried to write questions down as the popped into my head to take to appointments. I also asked to see my Mammogram so i could ‘see’ and understand just how much of the breast was affected and why MX was the only option. I’m 5/6 weeks post op and taking one day at a time but if i can offer my virtual ear i am listening.
Take Care
Jo xxx
Hi jo, thnx for your response. Saw surgeon yesterday and bcn and feel a little relieved now. My only concern is that op not scheduled until 28th feb and that seems a long time to wait. Also opted for implant but confused because if they decide rad required then implant shouldn’t be done til after treatment, but as they won’t get pathology back til after op they will have done implant ??? Few more questions to ask I think. Did you have recon at time of mastectomy and what sort. How was op and after?
Luckily I have a lot of very good friends who have been very supportive. No family sadly except my son who is at uni so trying to play whole thing down in front of him as don’t want him to worry and mess up his exams. It’s hard to be cheerful tho !!! Jax
Hi Jax
I hope you doing ok. (if you know what i mean)
My advice now is write all your questions down as they pop into your head and then you’ve got them ready to ask BCN or your consultant at the next opportunity. It does seem to vary area to area, hospital to hospital on how quickly surgery is carried out.
I had first appointment at hospital on the 18th November, mammo, ultrasound and biopsies and was told there and then that it was cancer. It was a huge shock to my husband and me. The consultant was great and pushed the test results through quickly and it was confirmed to be DCIS on 22nd November. On the 25th November the consultant had the meetings with the ‘other’ doctors and agreed only a MX of the right breast was the way to treat it due to the large area involved. I had 70mm High Grade DCIS confirmed post op. I also had a SNB at the time of the MX on the 15th December. I was offered a Recon with MX but couldn’t get my head around the idea, also there was a chance that it had spread and i would of need radio for the breast and chemo if there had been nodes involved, so like you mentioned they can have adverse effects on implants. So i made the decision at the time to just have the MX and consider Recon as a future option. I asked to see my mammo so i could understand why i had to lose my breast, you could clearly see the large area affected.
I am 6 weeks post op on wednesday,(today, gosh i’m up late, or is it officially early? lol) there have been some dark days, some darker than others but it is starting to get easier, lighter.
I have young children and didn’t want to upset or scare them going home with drains in and the my consultant was very suportive of that so i stayed in hospital 5 nights.
You mention your friends, accept all the help and support they offer. You will need to take it easy and rest plenty giving yourself time to heel. I guess more so with recon at the same time. As for your Son, have you told him anything? It can’t be easy trying to protect him?
There will be days when you will cry but there will be days when you will smile also? Cry on the days you need to cry and smile on the days when you can smile.
It has been hard to accept that surgery is all they needed to do to ‘get rid’ of it in the end. They achieved clear margins from the MX and there was no further invasion, and due to my age no radio or tablets needed.
I do hope this has helped, and any further help or supoort i am here.
Take Care
Jo xxx
After reading all the comments over the last month I do feel much happier that it not only me we has not had any further treatment. I am due my mext check up on 11th Feb and I am going to ask for my consultant to go through my pathology report with me again as I feel I am in a better state of mind and will be able to take in all the information better, now that some time has passed from my op. I also have lots of friends and family around, who try to reasure me about not having any further treatment.Will let you know how I get on after my next check up.
Suziex
Dear Suziex,
After reading your post I wondered if the BCC publication “Understanding your pathology report” might be helpful for you at this time. I have attached the link:
breastcancercare.org.uk/upload/pdf/pathology___feb_08_0.pdf
Very best wishes
Janet
BCC Facilitator
Dear everyone,
I’m in a similar state of worry, not so much about the lack of treatment afterwards, more about the whole DCIS thing. I’m about to have mx for DCIS in the right breast, following an WLE on 19 jan where the DCIS was found to be much bigger than expected. My surgeon says that they don’t give a grade for DCIS,although I was told that it is not invasive and there is a clear margin. I’m wondering why my doctors don’t give a grade to DCIS when other places do?
I’m concerned about the DCIS generally too, largely because my mother is currently undergoing chemo for grade 3 IDC in one breast, having had IDC and DCIS in the other breast 18 years ago (WLE/Rads) - the DCIS was not calcified and therefore invisible.
Only a small part of my DCIS was visible on mammogram (none of it was palpable or visible on ultrasound). It worries me that there might be invisible DCIS in the other breast which was clear on the mammogram. I know this is unlikely, but I’m seriously considering having a bilateral mx because of that worry.
I think I’m probably over-reacting, and it’s only been a week since I was told I need the mx so I’m still quite emotional and confused.
I’d love to know how you feel about this, or any other experiences you have with DCIS.
Thanks, Lynne
Hi again everyone, I’ve just found a really interesting website which has a page relating specifically to risk and DCIS. It explains why there’s such a wide range of statistics, and how they are manipulated to make a drug look good, for example. The risks of recurrence with or without treatment following WLE are actually very low when looked at with an understanding of how they were formulated. See
dcis.info/understanding_risk.html
Hope this helps, it’s cleared up a few of my worries for me although I’m still considering bilateral mx for other reasons.
Best wishes, Lynne
Hi Suziex,
There seem to be a few of us out there! I had Mx on Dec 3rd 2010 and am being treated on tamoxifen for 5 years, no Chemo or rads. I have just turned 41 this month and just went back to work last week.
It takes a lot of faith to trust and believe in life after MX. I got my results on the Tuesday (DCIS x3 10, 5 and 3 mm all grade 1) and was told I needed an MX and Lymph node biopsy (they were all clear) and I had the surgery on Friday the same week. I felt like I was staring down the barrel of a loaded gun and before I could get my head around it they are all saying, It’s all ok, it’s gone, don’t worry!
I feel I want proof, definatives, but of course I can’t have them and so I must just hope and pray and get up every morning and get on with living.
It’s scary! It’s always there in the back of my mind and I don’t know if it will ever go away.
I can’t wait for them to get me on the list for reconstruction. It’s vain but I hate being with one breast even though I’m lucky to be here at all.
At the same time, I read all the stuff on here and some of the girls are going through an even worse time than me and I think of how much harder and longer this journey could have been and I just have to thank my lucky stars.
Hope it gets better, you are in my thoughts.
X
When I was DX mid October last year. I was told should only be surgery. Anyway when results back from WLE number 1, DCIS confirmed, but low grade & only in one area. Unfortunately unclear margins on 2 sides. So 2nd op recommneded as area larger than first thought, also RT mentioned for first time.
2nd op in November and results confirmed very good margins they hoped everything been removed but still recommended RT due to:
My age (51) as possible it could come back in my lifetime & if so 50% chance it may be invasive.
Size of DCIS: 2.3cm as over 15mm RT recommended.
Family history: 2 relatives although not what would be classed as close (grandmother & first cousin (died at 42 with an agressive bc)) also other cancers on same side (We do have a large family mind you)
You have to take all the relevant factors into account; & weigh up your risk factor. With me I wasn’t facing an MX(in fact that wasn’t even an option put to me) if margins not clear though after 2nd op it may have been different.
I did opt for RT (waiting for planning op/tatoos/and treatment over 3 weeks oh joy!)Happy I made the right choice just the anxiety over the gap in starting RT. My Onc & GP have reassured me there is no risk of RT being less effective until 6 months after Op’s.
I did feel a bit lost after surgery, as seemed to be in limbo until I saw Oncologist in mid January.
Keep strong
LynneX