? recurrence after bilateral mastectomies

Hi everyone
Firstly I am totally new to these type of forums so excuse the first lengthy post but no doubt it won’t take long until I get the hang of it. Looking for a wee bit of advice/similar experiences.
I am 44 years of age just now, first diagnosed with DCIS when I was 23 years old. Back then the recommended treatment plan was a lumpectomy with quite a bit of surrounding tissue. I had 6 monthly checkups, and at a routine checkup when I was 31 I discovered not only did I have a reoccurence of breast cancer - but Pagets breast cancer this time, also unknown to me then at the appointment I was 9 weeks pregnant. So at that time I waited until I was around the 18-20 weeks pregnant had a mastectomy, to be honest had a great pregnancy gave birth to my only son who is now 13 years old.
I had a hysterectomy about 6 years ago non cancer related and this automatically put me into a surgical menopause - well anyone who is going through this will know it’s one roller coaster ride. However, about 2-3 years ago whilst in the menopause I started to get swellings, lumps, bumps in my other breast. At the time the breast surgeon who I had been under for years kept saying nothing to worry about. I don’t know if anyone else has had this experience but I often use to feel that doctors, ie surgeon/gp made me feel like I was overtly concerned about nothing, anxious. This was far from the case, if anything I never really self examined and should of and despite being a nurse myself for 25 years didn’t and don’t know a huge amount about breast disease. But I had different thoughts on the matter and was not comfortable with these ongoing lumps, bumps especially when in the menopause. After seeking a second opinion requested an elective mastectomy as namely a preventative measure. The surgeon was not happy at the time entirely to carry this out as I had sought an alternative opinion and he told me they apparently advise nowadays not to have preventative breast surgery.
Anyway, for some strange reason the surgeon left what can only be described as some breast tissue after carrying out the mastectomy, like a small fat pocket. I am accepting of it now but the scar is extremely high and there is huge puckering under the arm where lymph node sampling was carried out. If I am perfectly honest I havn’t self examined at all I honestly didn’t realise until recently that recurrence can take place in and around scar areas etc.
Anyway, now on to my current concern for posting!! A few weeks ago I began to feel a discomfort at the bra line with a piercing pain going towards under my arm, some itching. This came and went, but more concerningly I felt tenderness around the ribcage and a strange feeling especially at night and on rising of a pearcing/penetrating pain radiating from my back into my chest wall and ribcage around under my arm area when lying down.
Over the last couple weeks I was getting frequent episodes of dizziness and like something was pressing down on my chest with an associated cough. I was getting and still am breathless easy. I am getting dreadful numbness in my lower leg and excrutiating lower leg cramps which cause compression like pain right to my foot at night whilst lying on the same left side.
I saw a general surgeon today for ? varicose veins which I don’t have, but he was concerned after doing an neurological exam about my numbness, cramps and is referring me for an MRI of the spine. He did touch on the subject of breast disease recurrence.
I am a very realistic person not blase at all about this disease but I believe everyone has that instinctual feeling when they are not well. I just don’t feel right at all. Tonight I am still having this horrible feeling of something pressing on my chest wall, a cough at times with breathlessness, a feeling of fullness around the cervical collar. I do feel after examining myself an area of hardness around the scarline.
I am no longer under the care of a breast surgeon and despite trying to get a GP appointment today after no sleep last night I have an appointment with one of the locums on Thursday, my first port of call to ask for re-referral or to a one stop breast clinic.
If anyone has had similar symptoms like myself I would like to hear from you, although I feel concerned probably more so than before, realistically I do know somethings not quite right and with my previous history they do need to exclude recurrence/secondaries, so don’t be afraid to be upfront and honest with me please when replying!

Hello marley2 and welcome to the Breast Cancer Care discussion forums where I am sure you will get a lot of good, honest support from the many informed users of this site.

While you are waiting for replies, could I suggest that you give our helpline here a ring, they’re here to support you. Calls are free 0808 800 6000 lines open at 9am -5pm weekdays and 10-2 Saturdays.

Take care, and I hope this helps.

Jo, Facilitator

Hi Marley2, I cant offer any practical advise or shared experience, as yours is totally different to mine, but just to let you know we are all here for you, and will be keeping my fingers crossed for you with your appointment on Thursday. Plase let us know how you get on, and if anyone can offer an ear xx

Hello Marly2
I hope you get good news soon. I too believe that we have an instinctal feel for when something is not right. Please post up again when you get an update.
Positve thought heading your way xx

Thanks for the replies. Spoke to a breast care nurse today to see if I can be seen without needing to go through a new re-referral again, there is a 10 year discharge time if you have been disease free, I am that wee bit different as my prophylactic mastectomy was 2 years ago and def giving me concerns. Hopefully be able to get seen.

elective bilateral mastectomy 6 January 2016.

Any lady out there willing to share her scars

with me?  I am not just curious!  but concerned

that my cut is under right arm, totally across

  • what is now, lung area! - and under left arm.


Have not previously heard of recurrence;  so

I am hopeful that my practical and drastic

operation will remain clear as no other family

member has had breast cancer.


Whether or not I receive replies, I wish all

our sisterhood, of whatever age group, the

best that life can present.