Newbie with High grade DCIS

Hello everyone I’m a 68 year old pensioner just diagnosed with high grade DCIS 

 the technical terms used were… area A anterior & Area B posterior show High grade ducal Carcinoma in situ B5a total cluster of 46mm

when I spoke in depth about my diagnosis I was basically told it would be either a lumpectomy followed by radiation for 5 weeks or a mastectomy and no radiation. 

Since then I have read a lot about this DCIS and it does seem like there is a possibility that it may never travel outside of the ducts. 
I know with my high grade those chances are much higher but I was wandering if anyone on this forum has just decided to ‘Do Nothing’ and take a chance. Am I just grasping at straws or what? 
I also read that if you have it removed there is also a chance that it may come back so I’m totally confused and looking for some advice or guidance. 
I am waiting to speak to the surgeon and see what he recommends but (a) he’s a man (b) it’s his job to cut out cancers (c) surely he airs on the side of caution. 
I just keep thinking what if it doesn’t  turn aggressive & could I live with it for another 5/10 years and not go through evasive surgery. 
sorry this is so long but I’m so confused by what I’m reading and it’s leaving me very undecided. 
Thanks for reading my still undecided cancer journey, I wish everyone all the best as they travel along there’s 

  • Hi

    It is a quandary isn’t it ? The main problem that I see is that there is no interim test that can be done for monitoring DCIS - my husband has prostate cancer and has been on active surveillance for 5 1/2 yrs, with PSA checks every 3 months, as far as I am aware there is no comparable test for breast cancer. His cancer has now progressed and he is having his prostate removed this week, which is a horribly invasive operation which will leave him with a small chance of permanent incontinence , and a high risk of impotence. Luckily breast surgery is much less invasive, and once you have your treatment you can get back on with your life pretty much. One possible option would be if your DCIS is ER+, could you ask if you could start on the hormone therapy and see if you’re DCIS shrinks or progresses ? 

    There was a lady on here who had stage one grade one cancer and had no conventional treatment, but did unfortunately pass away from secondary breast cancer after about 7 years, but was still sure she made the right decision - I am not saying that to scare you but just thought you should see every side.

    Hope you get to reach a decision that is right for you,

    Jo 

  • I had high grade DCIS in 2015.  I had lumpectomy- it was 11mm , then 3 weeks of radiotherapy.  I believe now I would only have 1 week as they use stronger sessions for same effect.  I was warned DCIS can be hiding invasive cells which only surgery finds but also some medical professionals think treating DCIS is over treatment.  I took what was offered .  My DCIS went from intermediate on biopsy to high grade after surgery X


    Carol
  • Hello there,  it is always a tough decision with DCIS.  I had it in my right breast and it was grade 1 and 2 so had lumpectomy followed by radiation.  A small area had a margin at 1mm and the recommended is 2mm so had 3 weeks radiation followed by 5 days radiation boost.  My concern about yours is that it is high grade snd everything I have seen and read recommendations treatment for it.  There are studies going on now but they are all for the low grade DCIS.  You could always ask for another pathologist to look at your biopsy and get another opinion.  So many have different opinions snd that is scared.  I had thought of possibly participating in a study but opted for treatment.  I am a healthy 73 year old with no co morbid conditions so Dr wanted me to get treatment.  I also had stage 1 invasive cancer in left breast at same time.  What a sucky situation that was but I am doing well snd happy with my decision.   
    I understand how you feel and I think a second opinion would help you decide.  I also talked with the radiation oncologist about my case as I was in a stressful situation.  My surgeon suggested it as I couldn’t seem to decide what to do.  
    Good luck.  
    Barbara

    1. Barbara 
  • Thank you Jo, I appreciate your honesty and I really hope your husbands surgery goes well. This horrid disease touches so many lives in so many ways.
    I wish your husband a speedy recovery with the best outcome possible so you can enjoy many more cancer free years together. 
    good luck and thanks again 

    regards Lyn 

  • Hi Barbara, many thanks for your reply and telling me of your cancer journey. 
    im really glad to hear that at 73 you are now cancer free and it sounds as though you have made the right choice for you. 
    yes it’s difficult knowing what is the best way to go to be rid of this awful disease and I may, like yourself have to put my trust in the surgeons advice in the end. 
    I wish you all the best and hope you have many more cancer free happy years to come.  
    regards Lyn 

  • Hi Carol, thank you for your kind reply and sharing your journey with me. I’m so glad that all went well for you and it sounds like you most certainly made the right decision after they found invasive cells when undergoing surgery. 
    as mine is a much larger mass and I am small busted I do wander if they will suggest a full mastectomy when I see the consultant.

    It’s all a bit of a gamble when it comes to this horrid disease and I guess we don’t have any guarantees when or if it will strike us down. 
    we have to put our faith in the professionals and just hope we have made the right call. 

    I’ll hopefully get an appointment soon and then take it from there. Once again many thanks and I wish you a very long and happy cancer free life. Regards Lyn x

  • Hi Lyn,  I know about the stress for sure and my breast surgeon was very patient with me. I kept going back and forth between mastectomy and reconstruction vs lumpectomy and radiation.  It was a very difficult time for me.  I remember telling my surgeon that I wanted to make my decision based on the facts and not my emotions.  Those emotions kept coming back and clouding my judgment.   I am small breasted too and wanted to make sure that I would look Eyes ok.  It is hard for women with small breasts as not very many choices.  Lumpectomy, mastectomy with reconstruction or mastectomy and go flat are pretty much all.  Larger breasted women can have oncoplastic techniques so it must be nice to have choices.  One thing though is it must be more difficult to finds cancer in large breasts.  No easy path for any of us.  
    Take care of yourself and you will make the right decision for you.  Since I am 73 and my cancers were not aggressive this seemed right for me.

    Barbara

    1. Barbara 
  • Hello

    I can remember reading the booklet that came with my invite to my first mammogram  (I was 51) and it was after a very stressful few years including the death of both of my parents. When I read that booklet and it said something like "some women will be diagnosed with DCIS and have unnecessary surgery when it might not turn into cancer" my first thought was - yup that is bound to be me and I decided not to bother going for the appointment.  (I was at the end of my tether at that point).  Anyway, a friend of mine pushed me to go.  Phew!  I had grade 3 DCIS, but also grade 2 invasive tumour. Grade 3 is fast growing and I had 2 areas totalling 54mm.  

    Personally, if I hadn't had the tumour, I would still have made the decision to have surgery as it was a large area and fast growing.  46mm of DCIS is also a large area and as grade 3, it will no doubt be growing.  At 68, you are NOT old and although it seems as if it is a lot to face - operation and radiotherapy - think what would happen if you decide to leave it and it DOES turn into cancer. There would be a possibility of chemo. if it turns out it isn't ER positive and/or it spreads- even micro spread - to your lymph nodes. 

    I can promise you that a lumpectomy / mastectomy and radiotherapy is infinitely easier than chemo. (I didn't need chemo. as the tumour was only 15mm and ER+). I literally only had 2 days off work during the whole time. (large breast - so had a lumpectomy).  Whereas a friend of mine who had an 11mm tumour HER2 type needed chemo. and was off work for a whole year because she was so poorly.

    So my suggestion would be: (a) think about what it will entail now in relation to your treatment vs if it DOES become invasive (b) 10 years at the age of 68 is nothing! My friend's Mum was diagnosed with a tumour and had a mastectomy and radiotherapy at 80. She is 83 and is still playing badminton.

    I had my final annual mammogram last month and I am going to be signed off from my oncology team in August after 5 years and you will be surprised just how quick that 5 years went.  At the time I thought if I get 5 years, I'd be pleased - but now I think, where on earth did that time go?!!!

    I also remember reading the lady's thread who was grade 1 and her 7 year journey which was documented on here.  It was such a sad day when I had read that her cancer had spread and at the time felt such sadness that if she had had the conventional treatment, within a few months her life may have got back to 'normal'. Instead it consumed her life for the years until she passed away.  Nobody can say that any decision is incorrect and she was determined to try it a different way than the "cut and burn" as she described it but I just felt so,so sad that it turned out as it did.

    Kindest wishes, Lesley

  • Hi Leslie,

    Many thanks for your insight into the long and complex diagnosis of High grade DCIS. 
    I am now slowly coming to terms with the realisation that (a) High grade and (b) a 46mm cluster is not the best of DCIS to dither over. 
    I see the surgical team on 8th so will probably have an even clearer idea of which treatment will be best to go for. 
    Im certain that the ‘Do Nothing’ approach will not be recommended and I’m prepared for this. 
    my thought today is mastectomy but tomorrow I may think differently… who knows? 
    your head feels a bit pickled with all that’s going on and ultimately the decision you make will change your life forever so not to be taken lightly. 
    I really would not like to go through chemotherapy after seeing my friend go down that road so I hear what your saying re that course of treatment. 
    I’m so pleased to hear your good news that you will be having your five year all clear news very soon. I wish you well for this and many future  cancer free years to enjoy. 
    No doubt I’ll be back on this forum again asking further advice and help from all the good people like yourself, who help enormously with there encouragement and kind words.
    I hope to do the same once my journey has come to an end by passing on my experience and all the ups and downs along the way.
    once again my thanks for taking the time to reply and give me your words of wisdom, it’s been very much appreciated. Take care & regards Lyn x