Recurrent periductal mastitis. Advice please

Hi 

for 14 years I've had recurrent periductal mastitis. I'm 53 now and was told to give up smoking which I did 9 years ago. 
Ive had 3 surgeries to my breast and five needle aspirations. All to no avail. This recurs every few weeks and I am bought to the brink of thoughts of suicide by it - the pain is unbearable, I can't sleep when it's bad at all, it's quite simply horrific. My breast clinic say there's nothing more they can do and it's untreatable. I just end up bursting it once's it big enough myself. Which of course is dangerous and painful. I literally am at my wits end and wondered if anyone else has had similar experiences. I've begged for a mastectomy but been refused as it's not cancer. But my mother and aunt have both had breast cancer and I worry that it will lead to it eventually as all the scar tissue and trauma to that breast. Also for my mental health it's awful because the terrible pain it causes me takes me back to when my son died whilst I was still breast feeding and the agony I suffered in those first days. So it's just an awful situation and makes my life miserable. Any advice would be so welcomed. Sorry for the gruesome details. 

  • Hello and thank you for your post,

    I am very sorry to hear about your situation and the pain and distress it causes you.  I also want to say sorry about the loss of your son and the pain that this has caused you.

    You tell us that your mother and aunt both had breast cancer. Have you been able to discuss this with the breast team or GP? I say this because a small number of people will have an increased risk of breast cancer because of a strong family history of having it.  Families that have a strong family history will have the same or related cancer for example breast cancer or breast and ovarian cancer affecting close relatives (parent,  sibling and child). The age is often important as you would usually (but not always) see the cancer affecting family members at a young age, under the age of 50 or 40.  We have more information about the risk of having a family history of breast cancer on our website , please do read it here 

    If someone has a high risk of developing breast cancer there may be an option to have prophylactic surgery to remove the breasts. I don't know if this is something you could have so please do talk with your GP or the breast clinic doctor if you think your risk is increased.

    Another charity called Breast Cancer Now has some information about periductal mastitis on their website, you can see it here 

    I can appreciate the mental anxiety and worry this is causing you so I wonder if some help about how to cope with this and the death of your son needs to be addressed.  You might want to talk with your GP about this and you might also find the information from the NHS called Every Mind Matters is of some help, click here to see this.

    Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care,

    Caroline 

  • Hi Caroline

     

    I thank you so much for your reply and all the information. 
    I have spoken to the breast doctors about this but as my mother didn't develop the cancer until 60 and my aunt until 55 I'm not in this group. 
     

    I just feel so hopeless as have been told that my condition is untreatable and they've done as much as they can do. 
    It feels frightening to know that every few weeks I have to go through this awful pain and suffering with no end in sight and no help from anyone. 
     

    I will seek out some more mental health help. 
    Thank you yes I will call and speak to one of the nurses. 
     

    thanks again 

    Sarah