Another Re-Excision or Mastectomy?

I have just been given choice of reexcision lumpectomy with radiation or mastectomy after first surgery did not have clear margins. My breastscreen, mammogram and ultrasound did not show tumours, main one was palatable but once lumpectomy pathology came back  there were another 6 of varying sizes all very central, plus a scattering of pre cancerous bits. My MRI has returned with no further tumours to be seen so choice was as stated. I have opted for reexicion leaving mastectomy for a back up if necessary. I've grown used to my boobs, so I'm not ready to lose one. Hormone blockers are working and side effects are bearable, if unpleasant. I just want to get on with the rest of my life, ride my horse again and do my thing. I'm 80 next year. If only I didn't have type D dense breast tissue, I might have been diagnosed 2 years ago when I first noticed changes. Mammogram/ ultrasound showed clear...2 years later 7 tumours of varying sizes.

Oh Swisha, thanks so much for your reply. You sound like you are doing so so well, which is good for me to hear & terrific for you. So you had all 3 grades of DCIS, is that unusual & how much of an area did yours span. I'm having a contrast MRI in a couple days to hopefully reveal more of the extent of the DCSI & surrounding tissue. Pathology shows its high grade with comedo necrosis. I wanted a lumpectomy but breast surgeon said the DCIS span is too large 48x55x66 but could be even larger when they get in there.    I am considering an implant at time of surgery but that terrifies me as much as the mastectomy & is a bigger more complicated procedure. I really don't want to lose a breast & it's super hard to get my head around having a mastectomy when there is no knowing whether the DCIS will ever escape the duct. The treatment seems so extreme, so l'm hoping the contrast MRI will tell more of a story cos l am seriously struggling with this. You have been so brave with what you have gone through thus far & l hope you heal with no further complications, big hug to you 🫂

Hi Bren. It went well and I feel great. Not much pain after the surgery, as they put pain blockers in. The drain was a nuisance, but didn’t hurt. They give you a fabric bag to carry it around in, but I had made my own to use, as a cross body bag. I was in hospital for five nights, couldn’t go home until the drain was reducing less than 50 mils in a 24 hour period. I believe that public hospitals will often send you home with the drain in, and a nurse comes to visit your own, but I was in a private hospital. They were happy for me to stay there. I was very well looked after, the food was amazing, but I was ready to come home after those five nights. I wasn’t allowed to have a shower while the drain was in, just had to have a wash each day, and after about four days, my hair was disgusting, so they gave me this shower cap thing, that you just put over your hair and massage it through for a couple of minutes and then take it off. Towel dry and style your hair. They’re actually designed for people that are bedridden, to be able to wash their hair without water.So keep that in mind if you have the same situation, or just throw some dry shampoo into your toiletries bag.

I had a little bit more pain after the first couple of days, but it was really nothing to worry about. I’m two weeks out tomorrow, and I don’t feel that I’m very limited in doing things. I have been tired most afternoons and have had a lie down or a sleep a few times. 

I’ve felt really good since I came home, I was given a little sort of horseshoe shape cushion in the hospital, and that’s been really, really good to help me sleep at night. I’ve only been taking a couple of Panadol maybe twice a day. And the pain is really nothing to worry about.

My scar looks pretty good, it was covered by dressings for the first week and now I still have Steri-Strips on, although they are falling off, a couple every day now.

Ive been walking most days, just 15-20 minutes, but I feel that’s enough for me right now.

I see my surgeon tomorrow for a wound check, as she didn’t want to remove the dressing last week because it was still fully intact, and had just been changed the day before at the hospital when they removed the drain (which didn’t hurt).

I don’t have any emotional or psychological issues looking at my scar, I didn’t have large breasts, but the left one does look a bit weird there on its own.

The Breast Care Nurse at the hospital gave me a soft prosthetic to use in my bra for the meantime, until I can be fitted for a proper prothesis, which can’t happen for about six weeks.

When I’m at home, I’m not bothering with putting that in my bra but when I go out, I do, and no one would ever know. 

Best of luck for your surgery. Mine was DCIS as well, and I had low-grade, immediate grade and high grade. Luckily, after my fourth surgery, (the mastectomy), they got clearances, and my surgeon is confident that there is no more disease, and I don’t need to have any further treatment.

So I’m actually very lucky.

I don’t have an issue staying flat. Perhaps if I was young, and single, then I would have a reconstruction, but I’m quite happy the way I am.

My husband‘s also been very very supportive. Before I had it done, I thought I would be hiding myself from him when I came home, wearing T-shirts to bed or whatever, but I’m really not, and I’m quite open about showing him my scar and letting him touch it if he wants to, (not in a sexual way ha ha)!
Best if luck … you’ve got this!!

Thanks so much for your reply. Yes, very difficult. 
I'm glad you’ve had such success. Onwards and upwards x

Thanks hon x

swisha​ I am so sorry you have to go through this experience 😞...it's a lot to process and can be very confronting.  I have a similar story having had a DCIS diagnosis last October. I had Lumpectomy surgery on left breast which unfortunately didn't receive clear margins. My 2nd surgery pathology results identified disease anterior in my nipple so I had to go for round 3 of surgery to remove the nipple.  Happy to say the final pathology came back all clear 🙂 and after 15 rounds of radiation I feel my breast looks and feels amazing for the 3 surgeries she endured.  The 3rd round of surgery I really felt - it seemed to knock me around more than the prior 2.  I had them in quick succession so assume the anaesthetic had an accumulative effect.  At the beginning of my diagnosis I was all about a mastectomy and was extremely confused...totally normal.  Whatever you choose, it is the right decision for you....trust in that 💕

So sorry you are going thru this added stress & further surgery swisha​  You've been thru a lot already.   I was lucky & only needed the original surgery.

It is a difficult decision to make and I do not envy you having to make it.  There is a possibility of more disease being discovered in another excision, as the lesions appear to be 'long' instead of 'round' (given the latest lack of clearance.) ... Is your breast 'large enough' to have another bit taken out (without the need for building up again?)

How comfortable are you with the thought of having a mastectomy?   When I was first diagnosed, I was happy to go the whole way, if the surgeon deemed it necessary.  Luckily, that wasn't the case.  

Maybe give our helpline a call for a confidential chat?  Just talking it out with someone else might help with your decision making xx 1800 500 258

Take care & all the best