Double Mastectomy with immediate reconstruction

[Lindy6]

Hi Jo - just wanted to say hello again & wish you good luck for tomorrow having your drains out & getting your results !!
I went to see my surgeon yesterday to confirm my double mx with her & she threw me a complete curved ball !! She told me she had studied my pathology report again & had discovered that she had made an error regarding the size of my DCIS . Instead of it being 3cm linear measurement it was 3cm vertically making it a 1cm cube so much smaller than first thought . As such her recommendation for an mx on that side no longer applied . She is confident that she can remove this hopefully with clear margins & an uplift of my breast to ensure minimal deficit in the breast . My right breast which has a 15cm tumour she has always said can be removed with lumpectomy & radiation afterwards but as I was going to have one mx l had decided to have both done for symmetry & peace of mind.
She has talked me into having surgery on 22nd September on both breasts using wide local excision & treating it as another type of biopsy in order to try & save the breasts should all go well & I don't need any further surgery
I am happy with this cautious approach for now but if there is any need to go back in for further margins or an unexpected deficit then I will be going back in for a mastectomy .
It potentially means more than one operation but she has advised caution due to the low grade & small
Sizes of my DCIS & tumour .
This is like a game of Russian roulette as you never quite know if you are doing the right thing but this way I do get to have the pathology results and then make a decision whether or not I can live with the boobs staying on or not
Linda xxxx

[Joandthetribe]

I think being fit and healthy definitely works in your favour when recovering 🙂 I have been really strict with my diet since being diagnosed and would like to think that has helped too, it has certainly helped me feeling a bit more in control. I also take vitamin c and zinc supplements daily as well as arnica a week before and a week after surgery.

I got my drain bags from a site called 'Drain Dollies' although my hospital did provide me with a couple anyway, but they weren't as nice as the ones I bought!

Getting out of bed is initially a struggle as you can't lift yourself up on your arms. The electric hospital beds are a godsend for the first few days as you can virtually push yourself out at the touch of a button. I was worried about how I would manage at home and arranged for an electric reclining chair for the lounge - we are lucky that there is a charity in our village that loans out equipment like this free of charge, so might be worth checking whether there is anything similar in your area. However, I have actually only used it a handful of times...the kids seem to enjoy going up and down on it much more than I do! I actually found my big squidgy sofa more comfy, with a v pillow and big feather pillow behind my back for support. I haven't yet slept in my bed because laying flat on my back is uncomfortable still, but very much hope to after Friday.

My surgeon didn't mention anything about not laying on my front, but I can't imagine it would be very comfortable. I am a side sleeper and will be fine with this after a couple of weeks. My cousin went through the op in November last year and now has no problem sleeping at all.

Your boobs will feel numb forever I think, but mine are warm and softish - nowhere near as soft as natural boobs, but definitely not as hard as a knee cap. More like a warm pumped up beach ball (I asked my husband for a suitable analogy!) They are very perky and will never sag like a natural boob (hooray!!) But look slightly flatter at the front due to the lack of nipple, and are much fuller than previously. I have a horizontal scar that was glued after surgery meaning I could go straight into the shower, much to the amazement of my family and friends. I could have had a vertical scar but decided along with my surgeon that a horizontal scar would look better aesthetically. He also asked whether I wanted to go bigger(!) But I said I was quite happy just to look like me.

Please ask if you have any further questions, it's actually quite cathartic going through this and I am happy to help wherever I can.

Jo x

[Lindy6]

Hi Jo- I live near Chester so will be having my op at the local Chester Hospital. The drains sound hilariously long & I can see why people complain about them. Would be very interested to hear where you got the drain bags from as I imagine they are a necessity just to move about !!!
I think I have pretty much made my mind up to be brave & go for double mx fur peace of mind moving forward then at least I will feel that I did all I could to limit the risk . I am older than you but like to think I am a young 58 . All my friends were completely shocked when I was diagnosed as they see me as super healthy & fit so I hope that works in my favour !! I have only one grown up son who lives with his partner & a very supportive husband . We are both retired from work so I should have a very relaxing recovery . I am interested to know how you even get yourself out of bed as lifting yourself up on your elbows or leaning forward to move must be very painful . I have bought myself a V shaped pillow so I can prop myself up in bed did you need to sleep sitting up and if so for how long ? One of my surgeons also told me I would never be able to lie on my front as it wud be like lying on two beach balls 😂😂 and said that the finished breast would feel like my knee cap - very cold & hard ! Have you received similar encouraging information !!! 😁😁
Linda xxx

[Joandthetribe]

Morning Linda 🙂

The drains are probably the worst part of the whole procedure! I have 2 from each breast which are attached to VERY long tubes and and a large water bottle type drain. Even though I invested in 2 drain dolly bags the tubes keep escaping and getting caught on door handles! Roll on Friday when they are removed.

I feel really okay 11 days after surgery and have managed for the past few days without any painkillers at all. I have even been out and about into the shops for a couple of hours. However, I have fantastic support from my husband who has completely taken over the running of the house and children, meaning that I can completely rest when at home. I am certainly not back to where I was before the op yet, but I can see it won't be long after the drains have been removed until I am back to some kind of normality.

I live in peterborough, East Anglia. Where are you?

I also had a breast MRI as part of the diagnosis process, and was very worried about lymph node involvement. The MRI didn't show up anything worrisome in that area, but my breast nurse was quick to remind me the only way to know 100% whether the LN are involved is to biopsy them. I think the scans give them a very good idea, but certainly at my hospital they won't tell you anything 100% until they know 100%.

When is your op? Have you decided to have the double mx and reconstruction?

Jo xx

[Lindy6]

Thanks Jo for your continued support - great to hear your drains are being removed I hear this is a real necessary evil but very bothersome . How are you feeling now after your op ? You seem very up beat so a real inspiration for me on the cusp of the same surgery . Fingers crossed for your on going treatment & great to have a surgeon that you are really comfortable with . What part of the country do you live in ?
I had an MRI scan last week so hoping that will shed some light on the LN issue before my op .
Keep me posted how you get on please ?
Linda xx

[Joandthetribe]

Hi again Linda.

Like you, I had lymph nodes removed and tested as part of the surgery and no further treatment plan has been discussed until the full pathology results come back. I have been told chemo is likely because of my age, but not definite, and radiotherapy may or may not be needed also. I go for the results and to have the drains removed on Friday which will be 15 days after surgery and will then be clear on next course of action.

The surgeon warned me that there is a possibility that the implants could be damaged through radiation...and the strattice could fail completely. However he did say that if the very worst happened, the implants could be removed and then replaced at a later date once everything had settled. Obviously this is less than ideal, but he said the risks are relatively low and we would just cross that bridge if/when we come to it. I love my surgeon and would HIGHLY recommend him 🙂

[Hels_P]

Hi, I was diagnosed with Grade 3 breast cancer last Thursday.  Have had a breast MRI to see if there is any sign in the other breast and then have the vacuum biopsy to go through.  Once all this has happened then I will know the surgeons suggested treatment plan.  I have a horrendous family history of breast cancer (even a male cousin) and have been told that a double mastectomy is highly likely.  Do you this I should go for the immediate reconstruction as I really dont want to go through extra surgery if I can help it.  Thanks, Helen

[Lindy6]

Hi Jo - I forgot to ask you did you have any sort of radiation treatment after your silicone reconstruction ? I am having my lymph nodes checked at the same time as my surgery & although my tumour is low grade they will only make a decision on the need for radiation after the biopsy results of the tumour & lymph nodes a week or so later . I hear that radiation treatment can cause disruption to the implants as it shrinks the skin .
Linda xx

[Lindy6]

Noted - and I agree there are no guarantees but presumably more peace of mind moving forward
Thanks for posting so good to hear views from those going through the same thing xx
Linda X

[Joandthetribe]

I should probably add that having a mastectomy doesn't fully remove the risk of recurrance - the skin is still there and there could be the odd remaining cell, but the risk is definitely reduced. I was (and am) willing to to whatever it takes to reduce my risk as much as possible.

[Joandthetribe]

I don't think you're being paranoid, I think you are being extremely sensible going through all the options available to you. The decision was a very easy one for me - I am 39 with 4 children, my mum died when I was 21 of breast cancer, and getting breast cancer has always been my BIGGEST fear. My 28 year old cousin was also diagnosed last year and also decided to have a double mastectomy with immediate reconstruction as she decided she couldn't live with the worry of recurrance, so I guess I was lucky that I had her for support and to ask about the procedure.

After initially being 'talked out of it' by my original surgeon I was referred to a different one who was absolutely amazing. I did have to have a psychological assessment as I was removing a 'healthy boob' which l thought was a bit strange, but it was actually quite therapeutic talking through my reasons for wanting it.

The surgeon was very honest with me about the final cosmetic result-it will never look or feel like a normal boob, and the nipples are obviously absent, but after having 4 children mine weren't exactly picture perfect anyway and I felt this was a small price to pay.

I am so pleased with the result, although I know they still need to settle down quite a lot as they are still bruised and swollen. They are super perky and i have an amazing cleavage now.

I took arnica for 1 week before surgery and 1 week after and I think this helped with bruising and swelling, the surgeon seemed very pleased with the way they were healing anyway.

I would be lying if I said it didn't hurt at all, but it honestly hasn't been anywhere near as bad as you would think. It was very sore when I woke from surgery, but this was soon sorted by a little morphine.

I had my surgery on Thursday morning and came home on Monday. I could have come home on Sunday but still felt a bit wobbly and in need of an extra night to rest - my house is a bit manic, and to be honest I LOVED being looked after and waited on!!!

My chest doesn't really feel tight, although the bra I was given to wear for 6 weeks is super tight. The best way to describe the feeling is heavy, like there is a bag of sand on your chest. But this sensation isn't constant and according to my cousin does cease after a few weeks.

After 18 years of worrying about 'if' I am going to get breast cancer, being able to take this decision was 100% the right one for me. I just know I would have driven myself mad worrying about every single lump and bump (and I did have lumpy boobs) and the annual mammograms and MRI's would have sent me insane.

[Lindy6]

Hi Joan - thanks for your reply ! I have never had surgery so was concerned about the scale of the operation and if I would hate the results and yearn for my boobs back ! I have been told it is extremely painful with even difficulty and pain breathing as the rib cage goes up and down . You are only a week down the line and seem happy . Did your surgeons try to talk you out if the double mastectomy ? Do you feel a real tightness across your chest ? Are you happy with t he results ? Sorry to sound so paranoid but I am trying to gather as much information as possible not knowing what to expect
Thanks Linda X

[Joandthetribe]

Hi Lindy. After receiving a diagnosis of grade 3 breast cancer on July 13th I decided to have a double mastectomy with immediate reconstruction using a strattice and implant. I had the operation on Thursday last week, and have recovered remarkably well! I am thrilled with the cosmetic result and have managed for the past couple of days with just the odd paracetamol. The most painful part for me is where the drains are pressing on my ribs, which is made worse by the right fitting bra. Do you have any specific questions you need answering? I will try to help.

[Lindy6]

Can anybody share their experience of having a double mastectomy with immediate recinstruction using silicone implants please ? X