Forum Discussion
Double mastectomy - words I never thought I would hear or say.....
HI,
My name is Sally and I have been recently looking around this site and finally feel ready to post...
Next Friday 21st April I am booked in for a double mastectomy and immediate reconstruction, plus sentinel node biopsy following my DCIS diagnosis on 31st march. I am absolutely terrified of the post op pain and recovery, let alone what the next lot of pathology results will throw our way.
I think I am still in shock......3 short weeks ago my very pedestrian life with my hubby and 3 children was rolling along quite nicely. I had not a care in the world when a went for my first ever mammogram following my 40th birthday in Jan. I was just being proactive in managing my health after a crappy 18 months with chronic back pain from Degenerative Disc Disease and arthritis. I had been feeling really run down and tired for months - and every time blood tests were done, different results came back but nothing stood out to indicate cancer (just lots of variations in blood counts, high calcium, low vit D, changed shape or red blood cells). I have Coeliac disease too, so my GP and I were thinking that this run down feeling was associated with having an autoimmune disease......
Getting the call back from Breastscreen 2 weeks later was concerning, but still I thought all would be ok - they were just being thorough right?? 3 pesky spots showed up but still I was confident that nothing was nasty.....a biopsy was done and I went on merry way. That was a Monday and when I saw my Gp on the Friday for results I knew immediately things were not good before she even said a word (gosh that must be such an awful job to have to tell someone they have cancer!!)
I remember the feeling of the air being sucked out of my lungs at hearing the word cancer.....and then I went back to work because I suddenly felt the need to get time sheets sent off to payroll......shock does funny things to people!!!
since then it has been a whirlwind of appts and more tests......further biopsies revealed multifocal BC.......my amazing surgeon told me she could not save the breast and strongly urged me to consider removing the right breast to reduce future risk given that 2 out of my 3 lumps are not behaving like my other "garden variety lump". So as a mum of 3 I decided to go with the double mastectomy and immediate reconstruction with implants.
Apart from the fear, I am doing my upmost to stay positive and keep a normal routine and have continued.
reading such similar stories has been such a help over the last week or so - so many inspirational women on this site!!!
Thanks for listening x
Sally
Views
Sign in to react to this post
37 Replies
thanks for your kind words of support Jane @hopes and Dreams xxx
- thank you so much @nikkid xx
- Hi Sally,
We will all be thinking of you tomorrow.
Please keep us posted - here for you
Nikki x - Hello Sally @gingerninja, wishing you all the best tomorrow. You won't be alone as you'll be taking all our positive thoughts with you. Let us know how you are doing when you can.
Sending a hug, Jane xx - Hi Sally
This is my first time on here. Well done you for reaching out so early. I can imagine the feelings that you have right now- the eve before surgery. I hope that I can alleviate some of those fears for you. I was diagnosed with invasive bilateral lobular breast cancer in late February- WOW - what an emotional roller coaster!
I had a bilateral mastectomy, a left axillary clearance and insertion of a portacath on my 52d birthday - March 8th. Post operatively I was not as bad as I feared. I had help getting out of bed the first time but was able to manage after that. The drains were a pain in the backside- easy to forget about initially but the staff should hopefully supply you with a little bag. The pain was there- more so in the drain areas and it is a relief when they do come out. The pain wasn't unbearable and was managed well with regular medication. I showered myself the following morning and was given the option to discharge day 1 post surgery- I opted to stay another night just to recoup a little longer but if truth be told - I would have been ok at home. I was lucky that my big sis flew out from the UK to help me out. I also have a 13 year old daughter helping me too.This help was invaluable as you won't feel like doing meal prep, washing, nor will you be able to drive. Biggest challenge was reaching things in high cupboards- and frustrating.
My biggest challenge/ fear was waiting for all the results- fear of the unknown- loss of control. Once I had all my results and had seen my oncologist I no longer felt that I was on that roller coaster- yes I have good days and the odd bad days but with support and love I get through then - as only a Mum can do.
I have just completed cycle 2 of chemo- this will be followed by radiotherapy. A long journey ahead, but nothing that I fear I can't handle. I am not sure where this inner strength comes from- I don't think it was there before diagnosis.
Sally I sincerely wish you all the best for tomorrow. I hope things run smoothly for you and that you will be well supported once home again.
Love and best wishes
DebP xxx - Hi@gingerninja, thank you for sharing your journey with us. It is a journey we never thought we would end up with.
I was diagnosed with invasive lobular carcinoma on 23rd December last year. I was living my happy life with two beautiful children and a lovely husband. I was 40 years old. I felt my life turned upside down. I had lumpectomy before new year. But after many more appointments, further Investigations and biopsy, I was told my breasts are nightmares. I am booked for double mastectomy and reconstruction in 2 weeks.
Wishing you the very best with your surgery tomorrow! Lots of love and hugs for you xxx thank you ladies for your kind words of support and encouragement and handy hints!!! much appreciated xxx
Thank you Jane @hopes and dreams!! it was really helpful to read about your experiences :) your reply and insight is greatly appreciated. I am glad to hear that you didn't need further treatment too!!
cheers
Sally x
- Hello Sally, welcome to the forum but I am really sorry for your diagnosis. We can all relate to how you are feeling - we've all gone through the shock of being told we have cancer, whether we found a lump ourselves or had that terrible call back from Breastscreen.
These early days are so difficult dealing with the unknown. There is so much going on, it's like a foggy nightmare! I've always likened it to a roller coaster. There are days when you feel like everything is spiralling out of control and you just want to get off!
I had a left nipple sparing mastectomy with immediate silicone implant last August, 13mm IDC picked up in a routine Breastscreen mammogram. I was lucky and didn't need radio or chemo.
I was surprised how little pain I had post op. I got back to my room at 10.30pm and was really thirsty. Several glasses of water later I was up and down peeing 3-4 times in the hours immediately post op. Shower the following morning and a walk down the hall carrying my drain bag. The most discomfort came from the drain in my side under the arm. This one seemed to run up my side and over the top of my breast under the collar bone. Felt fantastic when it was removed on day 3. The other drain hung around for another 6 days. Neither hurt coming out.
The physio came to visit the morning after surgery and started my exercise plan. It's so important to do the stretches. It really helped the tightness in my pec muscle from the implant and stopped too much stiffness in the arm my sentinel nodes were removed from.
it also helped to gently massage my pec muscle when it initially felt tight.
Button down PJ tops were handy as I seemed to be forever opening my top for drains and dressings to be checked. Plus it made it easy for me to dress without needing to lift my arms.
You will be sleeping on your back for a while at home so make sure you have lots of pillows to support you.
You are never alone and will find amazing support here. Wishing you all the best for 21st Sally. Jane xx - Glad your doctor kept on testing to get to the bottom of the tiredness and didn't just say its children running you ragged. It sounds like with your back pain your doctor thinks having both breasts in surgery might help a little with that back too so that could be a good thing? Don't worry, they won't send you home from hospital too quickly having a double with reconstruct and they will have you on good pain meds and allow you time to adjust. My only real bad trouble was after the surgery I was puking all night as they gave me gas anaesthetic which we have now established I cannot take. Little tip for when you get home, plan hanging washing down low like on a foldable clothes line and hang your bathroom towel down low as well. Reaching up is a problem for a while due to tightness so move the high stuff in your kitchen cupboards that you use all the time down lower. Good luck with your op and pop back in if you need any help. <3
