DCIS need Mastectomy and reconstruction

Hi 

I joined this forum today after a manic month where a routine mammogram in July found 4.5mm of DCIS. Only solution is a mastectomy but they’re going to reconstruct straight away. I’m choosing a diep flap but it’s not done at my local hospital so it’s yet another wait whilst they do the referral. 

It would be nice to hear from people who are going through or have gone through the same. The shock has worn off but The lack of sleep  is beginning to take it’s toll.

Thanks for reading x

  •  

    Hi Joolz,

    Yes, it’s been a difficult year, but we’re still battling on. My parent-in-laws had been married for 80 years and were inseparable all their lives, so it’s comforting to think that they are together again.

    I’m thankful that my son’s op is behind him now. I lost my brother to a spinal injury when he was only 28 and, my sister-in-law has been left paralysed from the waist down following surgery to remove a benign tumour from her spine. You can only imagine how worried I was before my son’s surgery as a result. Even though his op hasn’t given him back the feeling in his fingers, we are so grateful and relieved to still have him here.

    I am delighted to hear how happy you are with your DIEP and am sure that you are eagerly awaiting the final stage. It’s a pity that you have to wait so long to get a reduction done. This seems to be something that worries most ladies.

    Being on Xarelto/Rivaroxaban is a small price to pay. You have come a long way from where you were and, I hope that things continue to go well for you from here on in.

    Kind regards,

    Jolamine xx

  • Frieda,

    Your case sounds so like mine, I'm a couple of months behind you, just waiting on the Sentinal node results before surgery. I'm hoping a mastectomy and reconstruction is all I'll need, how are you getting on now?  X

  • Hi there,

    I'm doing ok. Had the mastectomy and diep reconstruction at the same time about 2.5 months ago. I found the first week really tough as my reconstruction was very tight as I didn't really have a lot of flesh there in the first place. 

    My new breast is fine but half the size of my normal one; I was expecting this though. Next year in June time I'll have the other breast reduced, plus the new breast padded out a bit using liposuction from my sides, it's a much smaller op and a 2-3 week recovery time. 

    I am really pleased I went for the diep reconstruction rather than silicon. My scar doesn't seem that bad, it just felt really tight at first. 

     

    I'm back at work now and on the mend, managing yoga and running again. Looking forward to having symmetry again, but I've got used to wearing a prosthetic in the meantime.

     

    I was lucky as altho they found 3mm of invasive cancer amongst the dcis, it hadn't spread to my lymph nodes or nipple, so I didn't have radiation therapy. 

     

    Good luck with your operation and eat plenty of iron rich foods so you are strong for the surgery and recovery. Xx

  • Hi CCPT

    How you doing?  I'm currently waiting a mastectomy at the moment too.  Unfortunately due to complications since my lumpectomy and lymph node removal on 1st October the dates given for my mastectomy (1st & 20th November) have both been cancelled (not cancer related).  We were planning on mastectomy and reconstruction at the same time but again this has had to be changed and now I'll have the mastectomy followed by reconstruction next year.

    When do you hope to get your Sentinal node results?  Have they given an indicator how long after the results you'll have your operation? 

    I wish you well. Rosie

  • Hey, got my results last night and the lymph nodes are clear!!! Absolutely thrilled! Means that even if there is a little surprise with the mastectomy I won't need any treatment. So mastectomy and reconstruction in a couple of weeks. I'm an E cup but the best they can do is a B/C cup, they'll reduce the other one 8 weeks after. Just happy I'll have anything and thrilled chemo and radiation is off the table. The waiting is the toughest part, once I've got my plan I can deal with anything! 
    Hopefully you'll be done for Christmas with enough recovery time to enjoy some holiday time. X

  • Oh my goodness that truly is fantastic news and I am absolutely thrilled for you!!!!  You must feel like you are flying right now........  It's great how the positive news makes everything else so much better!!  Do you have a date for the operation or do you have to wait for a call?

    Like you, I feel the toughest part is the waiting when the plan is in place it's just go with it.

    Please keep me updated on how it all goes.  I've been recommended by ladies on her to get a mastectomy pillow so you might like to source one of those as they say it was a great help, other than that nighties so you don't have to bend over to put pj bottoms on and button or zip up tops.......

    Results day for me Friday so I may have news on my operation date then!!  Will let you know.

    I hope we are both sorted by Christmas so we can enjoy some of the festivities with a glass or two!!!

    Take care x

  •  

    HI CCPT,

    This is great news. You must be so relieved. I know that I was when I had my double mastectomy and didn't need any further chemo or radiotherapy. This was my second bout. I had my first 10 years ago when I had a lumpectomy followed by Tamoxifen. Second time around I took Letrozole for 6 years. I stopped taking this in July 2017.

    You are fortunate in that they are doing your reduction soon too. Some people have a long wait for this.

    The waiting and not knowing is by far the worst part of this journey. Now that you know what is planned, you are on your way. Do please let us know when your appointment comes through and, I hope that it all goes well for you.

    Kind regards,

    Jolamine xx

  •  

    Hi Rosie,

    I shall be thinking of you on Friday and hope that all goes well for you.

    Kind regards,

    Jolamine xx

  • Thanks a million girls! All the waiting makes it feel like this has been going on forever but September 19th was my first ever mammogram so in reality things have moved pretty quickly. 
    I suppose there's always be the fear of reoccurrence, I actually asked would they take both do I wouldn't have to worry but apparently that's not done. At least we're on their radar so anything going forward will be caught super early. 
    will let you know when I get my date. Here's to fast healing and good symmetry!! X

  •  

    Hi CCPT,

    I was lucky in that my surgeon agreed to do the double mastectomy, despite the fact that I only had one breast that was cancerous. I had a scare in the second breast just a few months before this, but fortunately the lump was benign. I don't know whether this swayed his decision or not, but as soon as I suggested the double, he was all for it.

    Here's hoping that you don't have too long to wait for your operation.

    Kind regards,

    Jolamine xx