Advice for someone about to have mastectomy, radiotherapy, then delayed reconstruction? Treatment plan changed last minute

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I found out on Friday that my surgeon has decided he wants to do a delayed reconstruction.  This decision was made 4 days before my operation date (mastectomy,  node removal and TUG flap reconstruction) due to fears they could risk leaving some cancer cells behind if they did the reconstruction at the same time.   

The plan is now for me to have a mastectomy, skin removal and node clearance in 2 weeks time followed by 20 doses of radiotherapy over 4 weeks and a delayed reconstruction next year.

I'd not mentally prepared myself for having to live with a flat side or go through radiotherapy. I'm trying to keep positive but this on top of losing my hair and other physical changes from the chemotherapy has come as a huge blow.  I know it's temporary and i know it's about saving my life but I'm worried how this might potentially affect my mental health living with 1 flat side when i had mentally prepared for an inatant reconstruction.  

Please can anyone offer me any advice about how I can prepare for this?   Is there anything I might need to know about what's coming?  Or anything that you found useful or wish you'd known/done/not done?

Thank you.

  • I had a mastectomy 4 weeks ago with full lymph node removal. I wasn’t allowed to have reconstruction as I’m pregnant. I was given a week from the plan of the operation to the actual operation date so didn’t have much time to prepare. I felt overwhelmed the day before and on the day due to fear of the general anaesthetic. And also worried how I’d feel being flat one sided. After the operation it was hard looking at the scar and seeing that I’m lob sided but now I’m feeling better about it. Wearing a bra with the prosthesis helps but not perfect as it’s not exactly the same as my other breast. You will get there just take each day as it comes and focus on the positive. After treatment finished you can decide if you want reconstruction as it’s major surgery. I wish you the best and keep us updated. X

  •    firstly I do sorry thst you're going through this whilst being pregnant.   I can't even begin to imagine hpw worrying it must be for you dealing woth your diagnosis and treatment at this time. 

    Thank you so much for responding to me with your experience.  Gosh 1 week to prepare, that must have felt like it so surreal.   

    They did mention the prosthesis and you've conformed my fears about them feeling different.   I've been told I'll be able to have a TUG flap reconstruction using my own thigh tissue some time next year, so I'm lucky that the flatness will be temporary which I keep telling myself but being half flat is still going to be a huge thing to deal with,  especially in the summer.

    8 weeks after my operation I've got a wedding to attend and I'll be sat at the top table.  I'm feeling awful and self conscious as it is from losing my hair, eyebrows, lashes etc, so this is going to make it even worse

    I'm definitely trying to focus on the positives but it's difficult isn't it.

    I wish you all the best with your recovery, treatment and your pregnancy. xx

  • Thank you. It’s very hard and having to adjust to the type of clothes you can wear. I have to wear full cup bras now and not wear anything that’s got a bit of cleavage as you can see the bra. Hopefully for you it’s just a temporary thing. They do feel different although I only have a temporary one and had to remove some of the stuffing. I’m hoping the permanent one will be better but have to wait for the swelling to go down. 
    Thank you. I hope your surgery goes well too x

  • Hello, I’m so sorry, and completely understand how difficult it is to get your head around.

    Something similar happened to me, the surgeon was very positive about breast conserving surgery, then, same as you, four days before surgery another biopsy found further cancer, and this changed to mastectomy. I knew I didn’t want a DIEP flap surgery, as I knew what this surgery was as a nurse myself. also because of chemo and radio, reconstruction wont happen for at least 2 1/2 years!!! I had very little time to research or think about what options I had and this isn’t my area of nursing. I choose to have a Beckers implant, with a 40% risk that within five years, due to radiotherapy, this will develop capsular contraction within five years (i believe I need 15 radiotherapy treatments after my 5months chemo first). However, I chose this option because once the full mastectomy without skin sparing is done, there is no going back and if the contracture happens, there is possibility for removing it and having a different implant if scarring not too bad, or removing implant and the skin to reconsidering the DIEP flap if changing implant not possible. Due to having spent four weeks being told this would be breast conserving, it was a total shock to change mastectomy last minute! I am now three weeks post op and I feel so much better about the choice I made and it looks much better than I thought it would! My husband and I discussed options and what seemed like the most important thing to me, (which also seems important to you) is that I could look and feel normal in my own clothing while this is all going on. The implant is not inflated at the moment, however, It has still given me a small cleavage and therefore I can wear the clothes and dresses that I did before and even my friends have said you would never know I just had a mastectomy because it looks like I have a cleavage! I’m so happy with the results compared to what I thought I would be (I’m not happy to have breast cancer or to have needed surgery, but much happier than I thought I’d be!). I’m just wondering if this could be an option that you request from your surgeon and then in a year or so if you’re not happy with the results reconsider the flap option? Just a thought if looking more normal in clothing would assist your mental health?

    I hope whatever decision you make, your head is in the best place possible  xx

  •    thank you  I've not dared to buy any clothes yet as I don't know what I'll be able to wear.  I'm guessing baggy Hugh next tshirts will ne a staple?  I've bought a few baggy button up shirts for the interim whilst swollen.

    How soon aafteryour op were you able to wear a bra?

    I've got a wedding 8 weeks after the op and I'll be on the top table so I'm really feeling the pressure of that looming.

    I don't know if you're aware but you can access free knitted prosthetics through a charity called Knitted Knockers.  I've applied for some this week.  They're knitted by volunteers ahd are apparently comfier than a lot of the silicone etc.  xx 

  •    thank you for your reply. I'm so sorry thst you're also going through this too and had a similar experience with them cancelling last minute and changing the plan.  Wow 2.5 years wait for a reconstruction?  

    I'm so glad that you found an alternative option that you're now happy with.  And thats fantastic that people can't tell the difference!  I bet that makes you feel so much better about it.

    I did ask about doing something similar but they're concerned about the potential for cancer cells being in my skin due to the position of one tumor so they'll be removing all of the breast skin too which means I can only have the mastectomy at this point unfortunately. 

    I'll be able to have a TUG flap reconstruction using my thigh tissue in about 9 months and they've promosed me it'll be a better quality reconstruction if we do it this way round and theyll know all cancer cells have been removed/blitzed.   so I'm telling myself that this is only short term and safer in the long run and this time next year I'll have two boobs again!

    I think it's the frustration of thinking by December everything would be done.  But now it's going into next year.  But one thing im learning on this journey is that nothing is definitely and to try and go with the floe as things come up. Easier said than done though!    xx

  • Hi. I wore baggy shirts as struggled with my arm movement and found them easier to put on. For the first week I didn’t wear a bra at all. Then I wore a bra for short periods if I was going out or people were coming round as I didn’t find them comfortable. After about 2 weeks I was able to wear a bra for most of the day without it being uncomfortable. What kind of dress are you wearing? I do have to adjust my wardrobe. I ordered them knickers. They seem more comfortable but haven’t tried them on yet. I’ve asked for an appointment for a permanent prosthesis so will see what that’s like. X

  • I had my mastectomy yesterday and am wearing a post operative bra with a soft prosthetic today. It’s not as obvious as I thought it would be. 

  •    I have ordered this dress.   I'm not sure what it will be like when I try it on but I'm thinking the baggy top and high neck will hide a bulky bra and prosthetic Fingers crossed

    That's good that you've asked for an appointment for a prosthesis fitting. Hopefully that will help.

  •    thank you for your reply. I hope that you are recovering well from your mastectomy. That's reassuring to know you're able to wear a bra and softie so soon after your op.  Wishing you a fast recovery.