Hi. Has anyone else who has been diagnosed with dcis and has been recommended mastectomy decided the watchful waiting approach instead? Dcis may not become invasive in a lifetime… I know it is a gamble to wait, but if there’s a breakthrough in cancer research re dcis in the next few years (?) Using an alternative approach with diet etc - could i save my breast?
Hi
I was diagnosed with DCIS - 8cms and told I needed a mastectomy which I had in June. That was the advice I was given. I was told noone can tell if and when it would develop into breast cancer. I really really didn’t want the op - I hate hospitals and I hate the idea of a general anaesthetic. I would prefer to have two breasts BUT I would prefer just one breast and no breast cancer. I was rough for two weeks after the op - then recovered very quickly. I feel well now, wear a prosthesis - which I feel very happy and comfortable with. People in the know tell me I look good - and that helps.
Whatever decision you make - I will be thinking of you.
All the very best.
Liz
Hi i was originally diagnosed with dcis over a 3cm area was told i could have a lumpectomy or mastectomy, i chose the mastectomy with immediate recon which i had in march this year.My biopsy rresults came back after the surgery as also having grade 3 invasive ductal carcinoma with lympho vascular invasion.My breast surgeon said that i had made the right choice. I have a strong family history of breast cancer,my mum gran and great gran all died of it,and 2 aunts my sister and cousin also diagnosed with it so i will be having my other breast removed to hopefully prevent getting cancer again.I didnt want to make that decision but glad i did hopefully i will see my 3 kids get married and have kids. Good luck in whatever you decide
julie x
Hi there
This issue has raised its head so many times. DCIS - do you treat with aggression because it may be potentially a killer, or keep a watchful eye on it. As someone who has had DCIS themselves, I know exactly how you feel. On the one hand you want to get rid of these horrible cancerous cells, but on the otherhand, a mastectomy seems so drastic if it may never spread and cause problems.
The points to consider are 1. your age - the older you are when DCIS is diagnosed, the more unlikely it is to develop into cancer
2. The size of lesion - if the lesion is widespread, then it is more difficult to contain with surgery. One of the most important factors to consider are whether clear margins are obtained after surgery. This means if it is a small lump, then the surgeons are likely to remove it all. If it is widespread, such as in your case, then they probably won’t be able to get a good clear margin.
3. The grade of the cancer - if it is low grade, then it will develop at a much lower pace.
Perhaps you need to ask more questions before you make up your mind. You need to know more about your particular situation and whether if left untreated, would the DCIS in your breast go on to develop cancer.
Ps - I found this website useful when making my decisions so I have posted the link for you
I also was dx DCIS and had WLE which discovered I had invasive cancer as well so I opted for the mastectomy without recon in case they need to do more treatment. I am now on Tamoxifen and wear a prosthesis and unless you know me would not guess I had been through anything at all.
I am one of the lucky (?) ones caught on 2nd screening (over 50) and would advise that its a personal decision and I am not brave enough to say no and then regret later. I have a grandson I want to see grow.
Good luck with your decision.
Dx
Thank you for your replies. Westie123 and daisy do - when they discovered invasive bc after your operation, did you have to have chemotherapy? I am so worried that in the worst case scenario - they will discover bc after my mastectomy and I will have to have chemo to add to the trauma. If its possible I would prefer to have my lymph nodes checked first.
I was dx with DCIS after my first routine mammogram. A mastectomy was recommended. A few days after dx I had one day when I thought should I not have the operation and just wait to see what happens. It was only for one day though because I realised I would just feel like a time bomb waiting to go off if I didn’t have the operation.
When I got the results I was told I had a 10mm tumour developing but it was well away from my chest wall so the surgeon was happy that he had removed it all during the mastectomy. Fortunately I didn’t need any radiotherapy. With the benefit of hindsight I am glad I had the operation.
All these posts are our experiences. You have to make the decision based on your own dx and by talking to your own medical team. One “good” thing about DCIS is there is often no hurry to make a decision so you have time to consider all options including reconstruction.
Having a mastectomy certainly isn’t a walk in the park but you will come to terms with it. I have got used to my prosthesis now and most people say they forget I have had a mastectomy because I just look my old self when dressed. And I am alive and I intend to be for a good many years to come!
Good luck with whatever decision you make.
Love
Maude xx
Hi undecided,
I was too diagnosed with DCIS one day last year. There was no previous symptom just a sudden problem (droplets of blood from the nipple). After 3 biopsies the first consultant recommended a mastectomy. I then had a second opinion and was told the same thing for the treatment of a high grade DCIS comedo necrosis. Following the mastectomy I received a path/lab report which confirmed not only I had the DCIS but I also already have a grade 1 invasive ductal carcinoma. I never looked back. It was the right decision. I would chose having no breast rather than having cancer. Good luck with your treatment.
Hi undecided
yes i did have to have chemo 4cycles, and have also started on herceptin as im also her2 positive as well. I did have a sentinal node biopsy the week before the mastectomy and they where all clear.As a lot of the ladies on this site have said chemo also depends on your age ie.under 50 they seem to give you it, im 45yr, but i did not have to get radiotherapy. julie
Hi Undecided,
I was also DX with DCIS two areas and was told mastectomy was the only option or wait and see, As it was just before xmas I left the decision until the new year and finaly went for the mx as I felt I would constantly be worrying if and when will the cells change and how would I feel knowing I could have prevented it. Thankfully I did not need any further treatment and now am about to have a yearly appointment for mammo for remaining breast. I did not go for reconstruction at the time and cope quite well with the prothesis though must be honest I do have days when I feel very p****d off with it. It is definately a hard and personal decision to make and wish you all the best with what you decide.
Maggie.
Thankyou all for your experiences. I can’t find anyone who has decided to wait and see(because of the horrendous potential consequences of course), but considering only 20% of cases have dire consequences if left untreated - this must mean most of us have had mastectomys unnecessarily. If I did wait and it did turn invasive then I would have a mastectomy and chemo (I presume). As I see it there’s not much difference. I certainly don’t feel lucky that I ‘only’ have DCIS. But maybe I should?
Hi
It really is your decision, and there has been a lot of debate on here about DCIS.
Mine was found, on first screening mammo. It was a small area - and WLE and radiotherapy was the treatment. Personally - even though it was low grade - I knew I would worry if it was left. A friend of mine who had the same sort of Dx was offered the “watchful waiting” approach - but she also opted for treatment. She is a doctor herself - and knew all the statistics - and her feelings were the same as mine. Has it changed today…will it change tomorrow…might it never change…
Funny how the “lucky” word crops up! - no doubt you will be told frequently how lucky you are “they’ve found it”/“it’s early” and so on and so on! My retort tended to be - “If I was THAT lucky, I wouldn’t have got it!” - but yes, between ourselves - there is the degrees of luck involved. DCIS is the “best” to get in lots of ways, yes, we still go through the horrible weeks of diagnosis and disbelief that this is happening and the treatments have got to be dealt with. But, chemo is avoided in “just” DCIS.
As a friend of mine so eloquently put it:
“It’s still a s**tty stick, you’ve just got the less sh**ty end!”
Hope that helps!!
Good luck with your decision, let us know how you are,
Lizzie
Hi Undecided
Please, please don’t think that if you wait until your DCIS has turned invasive before you have treatment that it won’t matter. The horrible thing about cancer is that once it has turned invasive, it could have spread elsewhere in the body. This is why so many breast cancer patients develop secondaries, despite the primary being small etc. At the moment, your cancerous cells are contained and if removed will hopefully not return or become secondaries. I know it sounds such a huge decision to make but if you gamble and it turns invasive, you may not get a second chance.
It is very difficult to know what to advise as your are right that many DCIS remain harmless, especially in elderly people. However, if you are young, it has many years in which to develop into cancer. I don’t mean to sound scary but this is a fact.
Good luck
Hi everyone
Just a quick note. I’d like to support what Cathy59’s written 200%!!!
Mine was initially ‘medium grade’ DCIS (beginning of March). I ummed & arr’d about whether to leave it. My mast + recon took place 2 months later in May. When I went for post mast results, the disease was descrbied as ‘predominantly HIGH grade with 4 foci of invasive disease’. Had this had the chance to spread, I was on the way to inflamatory breast cancer (was told that this is very agressive and very quick and without treatment I probably wouldn’t have seen the end of the year) - I didn’t have a lump and may never have got one - it was my nipple and irritation on the breast that made me suspicious in the first place.
So for me, to leave it could have proved fatal … whereas for others, ie low grade DCIS etc, it may not develop into anything. As Cathy59 says, I also don’t want to scare anyone but think the message should get out not to just think that ‘sitting & waiting’ will necessarily be an OK option.
Lots of love to all. Cathy x
I have had a second opinion and I am currently on tamoxifen while I make my decision. Thanks to all you ladies for helping me make up my mind. I think you can guess I will be opting for mastectomy with immediate recon. Tram flap was mentioned. I really can’t afford to wait forever as I’m early 40’s and have a son to consider! I just wish there was more research into dcis. I am willing to go on a clinical trial but there is not one for pre-menapausal women.
I was 32 when diagnosed with widespread DCIS earlier this year.
It was high grade as well, and so I went for a mastectomy and recon in June. Turns out about 10cm of DCIS was found, but nothing invasive. Who knows when it may have ‘turned’ but I wasn’t about to sit around waiting for it to happen. I think the stress of that would have done me in totally.
I’m glad I had the surgery, but I think my decision was easier as it was high-grade and wide-spread. In any other circumstance, maybe you need to ask yourself, which one of the options am I most likely to regret in the future?
May you have wisdom and peace about your decision.
Donna x