Was my mastectomy a mistake!!!

Hi Deb,

I can’t sleep either. I think that whatever treatment you have it whirls around your head as soon as you try to sleep. 
I lie awake and work out how old my kids will be in 5, 10 and 15 years time and wonder if I will be here. I am certain that we are normal and that everyone has the same fears/worries. 
My thoughts on your situation are that you have just been through a major trauma and are bound to still be in shock. You don’t say if you had reconstruction but if you haven’t then that is an option open to you. Try to stay positive (I know it’s hard) but there will be better days ahead.

claire x

Hi Debs,

            Sorry to hear you feel  like this. I’m going for my masectomy on Monday 20th April. However I had the option for lumpectomy and SNB which I had feb unfortunately margins weren’t clear so got another op WLE to remove more tissue and axillary node clearance but still margins not clear which we were hoping for so now masectomy.

I know I had options and you didn’t which I can’t imagine what that must feel like. Unfortunately know one really knows what will happen  which is the most terrifying thing about cancer. I was scared with this covid that I wouldn’t get my masectomy and would still have the cancer. I was diagnosed October so have had  a while to get my head round this, much better since I was diagnosed but still anxious scared and weepy at times. It’s such a long process but planning on getting there. 

Been looking up knitted knockers  which I saw mentioned on this site my sisters going to knit me one. I’m a 32E so anxious of how I look. The way I try to look at it is the cancer will be gone I can get reconstruction and hopefully in a year or 2 will have new breast and an uplifted one,  so 2 perky breasts.

Thinking of you 

Gail

Xxx

You could ask if they found anything else from the mastectomy.  I was offered both,  and my surgeon warned about how some women want it out so choose a mastectomy them regret it,  but i wanted to make sure as it's quite common to miss something and have more surgery. In my case I was told that I'd made the correct choice because there was an area of DCIS which didn't show in any  of the mammograms,  ultrasound or biopsies before surgery.  I'm a 40C, so lop sided now  but I'm considering DIEP reconstruction in the  future (I didn't want an implant), and get by with a softie or knitted knocker most of the time,  my extra light silicon boob on special occasions,  or slob around thr house with a shirt over a tshirt and no bra. In my case it was also in one node (which didn't show on the ultrasound), but the tumour was grade 1/2, not all grade 2 as thought,  and ER 8/8, not 7/8  as thought.  I had chemo,  but no radiotherapy, which you'd have had with the lumpectomy. 

I miss my boob,  but I'm glad I made that choice s we wouldn't have seen the area of DCIS and it might still be there. It's really difficult coming to terms with a cancer diagnosis,  and it's harder still now,  as your team are probably busy working with covid-19 patients so have less time to support you like they usually would. Xxx 

Hello Dab,

I trust that when you get results they will inform you; i hope you come to terms with it, it will take some time and you should be offered reconstruction if that’s what you wish, at some stage in the future.

I asked for a copy of mine as I wanted to fully understand it all, and yes, there were areas of DCIS and also calcification away from the main tumour so the mastectomy which was advised was right. The bc was very near the skin surface too so some scraping needed doing to remove it all. 

I think my Mx was correct (2 years back now, and I’m fine with it) and I avoided further treatments apart from Letrozole as it proved 8/8 for oestrogen. 

Hugs xxx

Hi Claire, no they wouldn't do the reconstruction at the time of the Mastectomy,  I think it was because of the virus, longer time in surgery and recovery, that is what's make it so bad because they have closed our prosthesis clinic at the moment... I will be okay just a bit down at the moment seem to be like this at the moment x

Hi Gail, sorry your lumpectomy didnt work and now you have to have a mastectomy, but it's good that they are still going to do the surgery.....I think with us being big busted I'm a 34 ff makes it hard to imagine them being any thing like normal again.   But its early days yet, fingers crossed x good luck with your surgery xx

Hi Moomy, I have had the results, but had them on my own. So wish I had asked them for a copy of them too. He told me that they had it all, originally they wanted me to have chemo, radiotherapy and hormone therapy before surgery, I'm not even sure what size the lump was even though he did tell me...now I'm waiting for the oncologist to ring me because he said I will still need Chemotherapy...how did you know what to say no too?  Thank you for answering me.  X 

I had a lumpectomy and slnb. My lump was 30mm but worryingly they also removed what they said was high grade dcis from a different area which they said was 7mm. 
It concerns me that there may be more in there as neither my lump or the dcis showed on the mammogram or ultrasound and that maybe I should have had a mastectomy to be sure.
My nodes came back clear and I am now waiting for an Oncotype dx test to come back.

it is such a stressful time made worse by the virus as it is so much harder to see/speak to anyone. 

claire x

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Hi Debs

            I asked my breast care nurse and she posted me a copy of my pathology report. I’m a nurse so kind of understand some of it but not all which can make it upsetting as well. My friends a breast care nurse so she explained it. My plan is when I see the oncologists after my surgery to discuss and ask them questions so it’s clear in my head. It’s all so overwhelming.

Gail

xxx

Hi Claire, it is such a stressful time, and it is hard because of the virus you never ask the questions at the time what is now going around in your head.. it's good we can talk on here, because when I try to talk to my husband (even though hes been really good) he doesn't understand my fears. He says I should be glad that they say they got it all, but how do I know I havent got it anywhere else.

What's Is a Oncotype dx test? Xx