Hi just wondering how you all got on with the post sentinel biopsy and follow on treatment. I have been diagnosed with DCIS 7cm intermediate non Invasive and due to get a Mastectomy and Sentinel node biopsy with follow on treatment depending on the outcome? Worried that the size will indicate a spread post surgery. Any advice very welcome.
I had microcalcifications on an elective mammo, had the call back, biopsy, DCIS which was invasive, tiny but contained, then 4 lymph nodes removed to double check-all clear, and because I had been on HRT for 30 years + had to stop taking it and am just starting with Letrozole as mine was Es and Ps sensitive but HER neg. Am talking to the oncologist on Jan 10th, to discuss RT, and might opt for that instead of the Letrozole, if it's possible as the side effects of that have more significance for me. There just seems to be so many different opinions as there are sufferers! I'm in Bucks and wonder if the difference in treatments varies greatly across the country?
I am just starting my journey and they said I am intermediate too, so although I cannot help you with an answer I would be interested to know if others have any thoughts.
Hello I'd like to find out some more about your DCIS story. Further surgeries and how you are doing now? I have been diagnosed and mine is 8.4cm so I wanted to see how things went for you?
RT is not usually required when having had an mx due to the mx removing everything. That's not always 100% as I understand it but RT unlikely. And the fact I had 0.4mm invasive inside of 51mm DCIS, means that was removed as well, as the whole breast was removed! So still not expecting RT.
There are tests done on the tissue removed to see if any receptors are Oestrogen receptive or Progesterone receptive - our bodies have both hormones naturally and depending if those receptors are positive or negative, then if postive hormone treatment may be given (eg two examples are Tamoxifen or Anastrazole). Now with an mx shoulnd't be required as, again, everything was removed in the affected breast, but in my case I have a 4x higher chance of BC in my remaining breast (possibly due to the 0.4mm invasive but will need to check again with my consultant) and if the receptors in my left breast were ER positive then I would have hormone treatment to reduce any risk of BC occurring in my right breast.
That's my understanding but I may have misunderstood something or remembered it wrong, but that's the gist. I'm sure some other lovely lady can explain better than me. And you can look at some articles on here: https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment...
I've just noticed your post on this thread (I tend to concentrate on the Surgery one). Does this mean that you may need radiotherapy after all? Also, what is ER and PR? It mght help me to be more prepared for my appointment.
As we saw on another thread, Linda, we had the same procedure around the same time, but my SNB was back in June - 3 nodes removed and all clear.
However results from the mastectomy showed 51mm (not 50mm as originally thought) of DCIS of which 0.4mm was invasive. I also had some Lobula Neoplasia (LCIS) which was benign.
Right from the outset my consultant didn't anticipate RT or chemo for me as usually that wouldn't be required after an mx as everything would have been removed and anyway DCIS was non-invasive.
Said that, an appointment is being made by my BCN for me to see an oncologist by end of September, as later this week I will get the results back showing if I'm ER, PR or neither.
There's no set treatment path plan for all, it's, obviously, different for each woman as we're all different, just guidelines as to what could be expected after reviewing individual details, and extent of horrid stuff etc etc.
Hope you get good results at your appointment, please let me know. xx
I was diagnosed with DCIS in one breast at the end of June and had a mastectomy and LD flap reconstruction 2 weeks ago. I had a sentinel lode biopsy 3 weeks before my surgery and as that was all clear I was told that I wouldn't need radiotherapy or indeed any further treatment after my surgery. I'm hoping that this is still the case - I will find out at my appointment next week.
Good luck to anyone having to make really difficult decisions xx
Hi, everyone, l am 52 and was diagnosed with small area of dcis in right breast at beginning of July this year after being referred to breast clinic for pain in left breast. On getting my core biopsy results a week later l was put in for WLE and was told before the op l may go on Tamoxifen if the cancer was eostrogen receptive,but radiotherapy would only be discussed if needed after the biopsy from surgery. In the event the size was 7mm ,high grade with necrosis and receptive for tamoxifen. I was told l needed radiotherapy for 3 weeks to reduce reoccurrence as well. In was told there was no residual dcis on biopsy but the rads would mop up any that may be there unseen as yet. I will also have mammogram yearly for 5years. I did hear though that not all areas in England deal with dcis the same, which whilst l felt very lucky to live where l did, being a nurse myself, that fact really shocked me!! I am not surprised that so many of us in these posts are unsure and getting mixed messages. Al l can say is l have had to put my trust in the recommendation from the MDT as to my treatment plan even thought there is possible side effects from both the radiotherapy and tamoxifen. I believe that the criteria as was explained to me for radiotherapy was high grade with necrosis even though small, also perhaps family history.my mum had breast cancer diagnosed at the same age l am now. Good luck to everyone starting or undergoing treatment, thank you all for sharing your experiences and support on being diagnosed with dcis xxxx
I have DCIS, high grade and 5cm. I will be having a mastectomy and LD flap recon on Thursday. Radiotherapy, chemotherapy or hormone treatments are not in my plan as the DCIS is contained and lymph nodes are clear based on all checks so far. Hoping that is still the case when I get the results a week after the op.
Good luck with your choice NicolaJC and other ladies in a similar position.
Thanks so much for sharing your experience and for your understanding. I guess you're absolutely right that the Consultant would most likely not have said my declining radiotherapy was reasonable, if he thought otherwise. I am still in shock about the whole process, but just cannot bring myself to say yes to radiotherapy. I may regret it, but right now, it feels right...I think.
Thanks for the hug! I am glad I've posted on this forum, a first for me in any walk of life! I do feel supported by you and the other lovely women.
Thank you so much for taking the time to run through your experience for me. It's really kind of you. It's interesting for me to hear how much more information you have been given after your more recent experience. I wasn't told mypine would definitely become invasive because of necrosis, which was there. I just researched online and figured out for myself that it didn't look good. This helped me decide to have the lumpectomy. I guess I'm still in denial in lots of ways, as it's all been so quick. I haven't been given any personal percentage risks for recurrence. But what sticks in my mind is that having radiotherapy reduces the risk by 50% and doesn't take it away. Since I got the first call, I've made radical lifestyle changes, like finally stopping my small smoking habit, radically cutting down my alcohol consumption, eating less to get my weight down from overweight and eating mainly organic vegetables and whole grains. I know it's not a guarantee, but it helps me feel more in control. As you rightly say, everyone is different and has different experiences. But thank you for sharing your experience, it touches me greatly.
When they first told me at my mammogram recall that I almost certainly had DCIS, they said I probably wouldn't need radiotherapy. Later it turned out I had a much larger area than first thought, and it was high grade, so I did end up having it. But obviously they think it's fine not to do it for everyone.
My sister also had DCIS nine months before me, and she didn't have radiotherapy, they told her the risks outweighed the benefits. So I think it may be more common than you think not to have it. I'm sure your medical team would be a lot more forceful if they felt it wasn't a reasonable risk.
Having said that, I'm glad that I had radiotherapy, I didn't have any side effects from it and I'm more comfortable knowing that I've done everything I could to avoid a recurrence.
I think these decisions are really difficult with DCIS because of the issue of over-treatment. In the end, I think you just have to rely on your medical team, and what you're comfortable with.
I remember well the turmoil of the early days, it's so difficult making these decisions when you're feeling overwhelmed by everything that's happened to you, sending you a hug.
Goodness Peg, of course we will be gentle with you, it is about sharing experiences & supporting each other here after all 😊
Mine was a small invasive bc, so I did have rads, however, as you say, it is more of a grey area for you & I can certainly see where you’re coming from & I may have felt the same in your position.
You’ve taken advice from your surgeon & s/he sounds like they are happy with whatever you will decide.
Hopefully one of the other ladies who’ve been through similar will be along to share their experience.
Hi there, first post and needing support and information. After call back for my first post 50 screening mammogram, 'suspicious' mass of 8mm, which looked like invasive cancer, and 2 small calcifications nearby found on diagnostic mammogram and ultrasound. Two biopsies taken. At results appointment was told that it was in fact DCIS intermediate grade. I was so relieved. I had a lumpectomy two weeks ago. Results two days ago: 12 mm with 4mm clear margins, but there was some high grade DCIS. Couldn't tell me how much. Discussed radiotherapy which he said would be the next stage to help prevent recurrence. My instinct is not to have it, particularly because the mass was so small, it wasn't invasive cancer, if they do find something again having had radiotherapy, it will be immediate mastectomy, and they will offer me annual mammograms for five years anyway. Surgeon thought it reasonable if I don't have it and reassured me that if I did have a recurrence it would not be life threatening.
I would appreciate hearing your experiences and thoughts, but please be gentle with me, as I'm still feeling very raw and vulnerable. Thank you!
i was diagnosed in April with high grade extensive DCIS (8cm), which was over 20% of the breast. I was not given an option but advised I need a skin sparing mastectomy. Post surgery they also found invasive cancer and my only further treatment is Tamoxifen. No radiotherapy as they have taken everything away so no need.
Hope this helps you. 😀
My sister and I were both diagnosed with DCIS within a few months of each other. Hers was 3cm, mine 5cm. She had a WLE, but nothing else. Mine took two goes to get clear margins, and I had radiotherapy and tamoxifen prescribed.
I think the main difference was in the grade, basically how abnormal the cells were and how quickly they were dividing, mine was high grade which made it much more of a risk for recurrence.
They offered my sister a place on a trial where they didn't even operate, just watched and waited to see if it grew. She opted for surgery, but it shows that they are starting to look at whether they should actually treat all DCIS at all.
I was diagnosed with DCIS affecting the left breast in November 2016. I had a mastectomy as it was high grade and at 4cm was a significant size in relation to my tiny 34AA breast. My lymph nodes were clear and I didn't need radiotherapy or any further treatment whatsoever.
Hi Lizzy - can I ask how smal your DCIS was? Mine was (now excised) 7mm. I am 54 and in similar situation so would be very interested. Best wishes
I too have had intermediate. Following surgery I was told I would be 'offered' radio but the effectiveness against the harm is debateable. I had my appt with onc fully expecting your scenario of its there if you want up to you, but now he is saying I should have the radio or go for a masectomy with reconstruction to reduce risk of recurrence. I am totally confused also. Do nothing and its a 30% risk of recurrence, 50% of that likely to be invasive. Radio has its risks too and masectomy huge......is there anywhere where we can get some impartial advice?? I was all set for the no radio but now I am all confused again!
I had a mastectomy in April. I had 2 tumours that were DCIS and also a tiny amount of invasive cancer was found. I was grade 2 and intermediate. I was told that I did not need chemo or radiotherapy and just needed to take tamoxifen.
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.
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 can't imagine it is anything serious.
Wire assisted surgery usually means that the lump is very small, so hopefully you won't need radiotherapy.
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.
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 I'm not being to nosey sorry if I am.
good luck love Linda x
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 won'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.
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.
Just as an update, I've now been told I have some calcification on my other breast so they want to "keep an eye on it". Hopefully, that's all they'll need to do. Good luck to you all.
Hi all of you,
I had DCIS 5 years ago and made the decision to have a mastectomy. I'd been offered excision followed by Radiotherapy but couldn'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.
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.
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, i'm 47yrs.I'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 'gold standard'
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.
Oh facelady I did'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.
Hi facelady what area are you from? I'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.
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.
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 won'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
I'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 don't know what to do at all!
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 don'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
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 hadn'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. 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.
I had WLE, clear margins and was 48. My oncologist left me to choose but reading between the lines, it would seem that he felt I shouldn't need radiotherapy. However, after much research, scouring the latest journals, guidelines etc, I decided to go with rads but received a lower dose over a shorter period than the norm. There is an ongoing study on whether rads are needed for certain cases of DCIS so will be interesting to see the results.
I had Dx of DCIS - small area, WLE got clear margins. Age 50.
Right from the start, I was told that radiotherapy was part of the treatment plan - and that it reduced the possibility of recurrance. When I saw the oncologist - he used the term "sterilise the remaining breast tissue" - which I sort of related to, if that makes sense. As someone else has already said, my understanding was that this was "gold standard".
Yes, there is a big debate on DCIS being overtreated, mine may never have changed and become invasive, but - big BUT, even with a relatively "lightweight" diagnosis, I still felt that I wanted to do as much as possible to reduce the chance of recurrance.
Yes, the radiotherapy is tiring, not least because it is daily, and the skin reaction can be anything from "a bit tender" right through to "bl**dy sore, broken down, blistered" - but it is extremely doable. And for me, it felt like an extra insurance policy - belt and braces.
It's a personal choice - not one I had to make because it was a given, but I would have gone for it, if it HAD been my decision.
Wishing you, and everyone else here, the very best,