I was diagnosed with IDC last march. April i had a lumpectomy and 3 lymph nodes removed. After a short recovery i had 29 treatments of radiation. My last radiation treatment was june 6th 2017. I thought i would have a short recovery time from rads and then life would move forward. Every 7-8 weeks i have to have my breast and axila drained as it gets infected and i end up in hospital. Last week was drainage number 4. My surgeon says that this is going to continue for the next 10-12 YEARS… He says my only other option is mastectomy. I am gutted.Last march my husband and i decided that if i had to have a mastectomy then that was ok. But after going thru surgery and rads, to be told now i need a mastectomy it has just turned my life upside down, I am just numb… i have just got a referal for a 2nd opinion and thats 6th march. My radiationoncologist agrees with my current surgeon that i need a mastectomy. Do i just have 1 breast removed? do i have a double? reconstuction. OMG i just can’t think straight… i am so scared that mu husband will leave me if i have mu breasts removed.i can’t think straight… i just don’t know…can anyone help me please???
Jane my heart goes out to you. What a dreadful decision to be faced with. As you said, one thing to need a mastectomy to get rid of a malignant tumour, but quite another just for an infection. Have they said why you are getting recurrent infections? Your body & immune system are at such a low ebb after treatment that they are not as good at fighting iinfection as they would be normally. How can they say for sure that it will go on for a decade or more? I’m not a doctor, & the NHS being the way it is, i’m sure they wouldn’t have suggested another operation unless the6 thought it was the only way. I wonder if it would be worth you chatting it through with the nurses on the hotline. They’re really very good. Have they said whether they will be able to manage to do a reconstruction for you? All things to consider. I would be tempted to do everyth8ng you can to try & boost your immune system to see if it can get on top of the infection eg diet, exercise & alternative therapies like acupuncture etc etc. Sorry I can’t be of more practical help. Big hug coming your way though xxx
Hi Jane. I haven’t posted on this forum for quite a while but often read the posts. I was so moved by your horrible situation that I felt the need to reply to you. My history is that I was diagnosed with Grade 3 IDC in Jan 15. I only noticed the tiniest pucker in the skin of my right breast, didn’t feel a lump at all, but decided to ask my GP to have a look at it. She referred me straight away to the Breast Unit, where I had a mammogram and ultrasound, which picked up the lesion, as they called it. I had 3 lumpectomies, trying to get a clear margin, node biopsy all clear thankfully. I then had 25 rads. Put on Anastrazole, as I’m post menopausal. In May 17 I noticed the nipple on the same breast was flaking and bleeding. Alarm bells rang straight away and I was referred back to the Breast Unit. Surgeon did an immediate biopsy and was pretty sure it was Paget’s disease, a fairly rare cancer of the nipple. Given my previous history, he recommended a mastectomy, which I had no issue with. We had no idea whether this had spread to the rest of the Breast or the nodes at that stage. Had the mx and another node biopsy in July 17 and thankfully no spread. I am now considering whether to have the other breast removed, firstly because I’m in a high risk group with family history and secondly because I’m very big busted (H cup) and now very lopsided. My prosthetic is very large and cumbersome and no bra holds it properly. I’ve tried the lot! Don’t wan’t reconstruction and am quite happy to be flat. The MDT is fully supportive of another mx if I want it. Anyway, I am so sorry you are having such awful problems with infections but I think it’s very important you get your second opinion before you agree to a mx. I don’t see how anyone can say the infections will go on for 10 yrs. There must be a reason behind these infections, have they swabbed and isolated any specific bacteria? May I also assure you that your husband loves you for who you are and having a mx will not change that in any way. Of course it’s a time of adjustment for both of you if you do end up having an mx but you will still be the same people.