Post surgery with DCIS

Hi, I'm a 54 yo woman, diagnosed last week at my surgery FU appoint, with DCIS.  I didn't see my surgeon as I think they were off but the person I did see was very nice.   My worry is that when I found the lump, I was told it was nothing to worry about; when I had the biopsy I was told it was nothing to worry about; when I was told I had DCIS I was told its unlikely I'll need any further treatment, & I'm now waiting for the results after my sample was sent for further testing & the MDT discussion.  I've looked at Cancer UK info, & have tried to look at studies regarding treatment vs no treatment but I feel a bit confused by the data.   Can I request radiotherapy even if the Dr doesn't suggest it, I'm really anxious about the future & don't know if I can cope for the next year til my mammogram let alone the next 10.   How does one put it out of their mind & just get on with life.   Any suggestions or advice gratefully received, as I feel I'm slowly going out of my mind atm.   Thank you

  • Hello, it's a rollercoaster of a time when you are first diagnosed. The Doctors and consultants will need to get all the results of your scans and tests before they can verify your treatment. Have trust in your team and they will do the best for you to treat the cancer going forward. 

    Best wishes

    Silver 

  • A rollercoaster is a great term for it.    Trying not to worry but can't help it, it was so unexpected.  Thank you

  • Fab mother 

    your consultant may refer you to oncology these will decide if further treatment is needed and yes you can ask for what you want but it's their Decision if they agree but I would always put your veiws and tell them how it's going to affect you if you feel undertreated 

    good luck I wish you the best 

    love Lara ️

  • Hi

    I was diagnosed with DCIS (HIGH GRADE) back in 2018, it's a difficult time waiting on results as its totally out of the patients control and waiting around allows for thoughts to run wild.

    I would imagine that regardless of the grade of DCIS will be operated on. I wanted surgery to get rid of the darn thing as I wouldn't want to be constantly worrying about a possible ticking bomb inside me. 

    My DCIS hid invasive tumours due to dense breasts so surgery was the right option for me. 

    With regards to radiotherapy, I doubt you would receive it without surgery, nor would you want to as it can only be done once, therefore if you got cancer in that breast in the future you would not have the option of radiotherapy thus leaving you vulnerable with regards to treatment. 

    I know it's difficult but try not to jump ahead, keep yourself busy until the results are in and then take it from there. X

     

     

  •  

    Hi FabMotherTucker,

    A very warm welcome to our forum.

    I am so sorry to hear of your worries. Waiting for results is always a worrying time, but you will feel better once you have the full picture. We all get more anxious when our sample is sent for further tests, but this is often just to clarify the extent of DCIS, as there are 3 different grades of this. Doctors cannot always tell whether or not cancer is present just by scanning the breasts, which is why they often carry out a biopsy too. 

    Despite the anxiety that this is causing now, this is the gold standard to ensure that nothing is overlooked. Whether or not you are offered radiotherapy may depend upon whether your DCIS is high, medium or low grade, but you will get the opportunity to discuss this with your consultant and your oncologist, so please don't panic. Some of the sample tissue sent away will also be tested to see if you will respond to hormone therapy. Some of us have this instead, or in conjunction with radiotherapy, but you will get a chance to discuss all of this with your doctors. 

    These people really are experts in their field and they do everything in their power to help us. I myself have had 2 bouts of breast cancer and am still leading a busy and fulfilling life 13 years later.

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Hello Magpie Maggie, I think you could be mistaken. I know of someone who had chemo & radiotherapy without surgery to the breast, some years ago. Its best to keep an open mind on these things as we are all different.  Also she did have radiotherapy course more than once ! Go with the Doctors advice & try to be positive  regards wishing you well .pip

  • I'm so sorry to learn of your diagnosis. I am awaiting my biopsy results too after having 3 samples taken on Thursday. 
     

    Can I ask what they thought the lump was or how it presented given them not being concerned initially? Was it the biopsy that determined it was DCIS? How long after your biopsy did you receive the results?

    Sending love to you xx

  • Hi FabMotherTucker,

    I'm 55 and a year on from my diagnosis of DCIS and a small invasive ductal (stage 1).  It's a pretty awful time, waiting for results (probably the worst time), as once you know what you're dealing with you feel better.

    DCIS as you will know is very early change, so in that sense, your prognosis is excellent.  I think most of the time it will be removed and if that's what you want then you can ask for this.  Surgeons do try to listen to what you want too, but of course we need to take their advice!  If biopsy shows it up being very low grade there may be some instances where they may do a watch and wait scenario.  If you're like most people in this situation you'll want it out asap, I know I did!  I was told initially that my biopsies showed my invasive was only 1mm and they were amazed the pathologist found it.  They also said they weren't going to overtreat it as it was so tiny and that it may have been sucked out in the biopsy.  This was not the case and post mastectomy it was all still there and was actually 10mm and not 1mm.  Thankfully the grade didn't change but nevertheless it was bigger than they initially thought.

    I think in all probability you will have it removed via lumpectomy then radiation.  Mastectomy is usually only done with DCIS if it is very extensive with more than one area, so this won't be needed for you thankfully.  I had a mastectomy because i had the 2 areas and the invasive but the surgeon was reluctant initially to do it.

    It's also prudent to remember that sometimes biopsies before surgery don't always show exactly what is going on (as in my case).  They're pretty accurate, but it's not unheard of to find additional areas of concern post operatively.  That was the case for me and I ended up feeling pretty relieved I'd had the surgery and that everything was removed in the mastectomy.

    If I were you I'd prepare yourself for the outcome of having this blighter removed.  Radiation is only given after a lumpectomy with clear margins as a safety net to blitz anything left.  After a mastectomy it's not needed so I didn't have it.  

    Whatever the outcome, I wish you well.  It's a bit of a journey but you will get through it, and you'll be ok.

    Sending you a hug.

    Mary

  • Yes of course you ask how it presented.    I felt a smallish lump towards the top of my breast.   The next week it had gotten quite a lot bigger & was easily felt almost up against the chest wall.    Went to GP that day, he referred on 2 week wait, but said because it had grown quickly & that it was soft it wasn't anything to worry about.   I had my mammogram & biopsy & the specialist nurse said "cyst" contents came out, so nothing to worry about.

    I was phoned after about a week by Consultant Breast surgeon who was very clear "It's NOT cancer" but we take them out just incase as sometimes they can turn into cancer.

    I was really shocked when I had my post surgery appointment to be told it was cancer, but non-invasive grade 0.   

    Were your 3 samples biopsy or during surgery?

  • Thank you for your wisdom, that's really helpful.   I hope you are keeping well.