Will they let me have a double masectomy and should I? Confused....

[Vintage]

Hi Missy1,
Just read your post and wanted to say I feel the same. I am 46.
I have had a MX already no recon and doing chemo at the moment to be followed by herceptin rads and tamoxifen.
My symptom was a discharge, no lumps could be felt eather. I have suffered with lots of cysts for years but it's always been fine.
Mamogram showen nothing, ultrasound shown one small invasive cancer, then mri shown large dcis also. Then pathology after MX was 2 invasive cancer areas and dcis in one quadrant of breast.
So as yourself I have no faith in future mamograms or ultrasound picking everything up. And the fact that I could not feel any lumps. I know they do not offer yearly mri scans eather.
I have been told after my active treatment if I still feel the same I could push for MX on other side, after some counceling ( I have cysts in good side also. They have been checked and are ok, but it freaks me out feeling them there.)
Not sure about reconstruction. I was thinking an implant on good side, but I also have a fear of having an implant on bad side incase it masks any regrowth in future. (This is in my head only) I have been told it won't, but I just can't make my mind up what to do.
I don't want the more advanced reconstruction as it just sounds too much surgery to me.
So just to say I totally understand where you are coming from on this. I do talk to my family about it but I don't think they understand how it feels.
Let me know how you get on.
Vxxx😆

[Missy1]

Hi

Thanks for the replies.  I had my appointment with the surgeon today and he was lovely.  Is happy to do a bilateral masectomy 🙂 Wants me to see someone to discuss beforehand but said there was no point fixing the cancer if I can't live my life afterwards to the full.  Was very understanding and also said that I could change my mind at any moment if I so wished.   Surgery booked for the 10th November with full axillary clearance also.  Phew.....x

[BecksD]

Hi Nikki,
I agree that it is important to be honest about what you want.
The main risk with doing more extensive surgery is the longer recovery time and greater risk of complications, particularly if you are due to have chemo after.
As you have done the chemo already I would think they would be more relaxed about what you are suggesting.
Good luck!

[Weeannie1]

Hi Nikki,

I had a similar situation, although I didn't have cancer in my nodes and I could feel a lump. The similarity lies in the fact that when I first went with my lump, they couldn't see it on mammo, and a fine needle aspiration proved negative. I was already being monitored for BC due to family history, and I went on to have another 3 clear yearly mammos before it finally appeared on the 4th. By the time they agreed with me that there was something there, it had grown into a 3.7cm lobular cancer. My immediate response was that I wanted a double mastectomy. They managed to talk me down to a WLE, and because of the size of my cancer, I had chemo and rads. The problem then was that I had absolutely no faith in the screening programme and just couldn't move forward. After my final rads session, I broke down and the radiology nurse sat me down and listened to my predicament. She got in touch with my surgical team and I ended up having an elective double mastectomy with immediate DIEP recon last December, which was roughly 14 months after treatment. I wish that I had stuck to my guns and had the surgery before I had further treatment but I'm glad that my surgeon agreed to treat my brain as well as my cancer. My advice is to go in and be very honest about how you feel and explain how it will impact you for the rest of your life. I don't think about cancer anything like as much as I did prior to my mastectomy, and I have absolutely no regrets about having it done. You may be required to have a psychiatric consultation prior to them agreeing to surgery (seems standard practice in some NHS trusts), but if you feel this is the right option for you my advice is to stick to your guns. 

Whichever surgical procedure you choose, I wish you health and happiness for the future.

Take care, Ann X X 

[Missy1]

Hi

I am having my last neo-adjuvant chemo on friday and have my appt to see the surgeon on the 14th.  I didn't find a lump in my breast - I felt a lump in my armpit which turned out t be my lymph node 😞  My doctor and consultant couldn't feel the breast lump and my mammogram was clear.  It wasn't until they did an ultrasound that they found the lump.  The biospy came back as grade 3 invasive carcinoma.  I am 44.

It freaked me out that the first I knew of cancer was when I felt it already in my lymph node and for that reason from the start of this I felt that I would want a masectomy and that they should take  both of them as I felt I can't trust my breasts anymore (if that makes sense).....

I sadi this to my consultant right at the beginning and he just smiled at me - now the appt is coming up I am starting to worry that he will argue that they want to do a lumpectomy.... I have read that there is no statistical advantage to a masectomy rather than a lumpectomy so am I wanting more invasive surgery for no reason?  I just don;t think I will be able to trust any monitoring afterwards of my breasts if I keep them....

Anyone been in a similar situation?

Thanks

Nikki