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 Frieda

    I had my op on 18th October last year. All went well and I was in hospital for 3 nights. Listen to your body as you recover. I ended up going back to work before my op just to keep myself busy. The wait was much worse than the op believe it or not. The night before a friend brought a foot spa round and we had a natter. Try not to spend it alone if possible. I joined some Facebook groups as well as this group. You need to communicate with people.                     who understand as you feel no one else does. 

    Work was amazing and I had 4 months off. Back now and actually looking forward to phase 2 when they even things up and make you a nipple. That hopefully should be imminent as I’ve signed the forms.

    Please don’t hesitate to contact me if you need to. Others helped me and I’d love to give back. 

    Take care and I’ll be thinking of you on 27 August xx

     

  • Thanks so much for posting back so quickly. Can I ask did you have the sentinel lymph node biopsy too during the mastectomy and did they find any invasive cancer in your dcis? Mine is intermediate dcis over a large 7 cm area and I'm worried they might find it has spread into lymph nodes, or they find some invasive cancer when they do the mastectomy? 

    Was the silicon implant route ever an option for you for reconstruction? I am quite slim and they've told me they can only get a b or small c cup from my tummy. I'm an e cup, so it will mean a reduction, which doesn't bother me too much. Although waiting for the surgery on the other one will probably feel long. How have you found that wait? 

  • Hi Frieda

    I had what they thought was 4.5cm high and intermediate grade dcis. It turned out to be 4.2 cm. Yes I did have 3 sentinel nodes taken out too. It was a 3 week wait for results, it should have been two but they somehow got given to the wrong doctor and that wait was tough too. All was clear thank god. No tamoxifen rads or chemo as they got it all. 

    I’m slim and was 10 stone size 10 and a c cup but I was asked to put weight on and I put on half a stone. My new boob is a d so I need lipo on it to even things up. 

    An implant was suggested to me but my personal choice after reading all the info was a diep and I wasn’t going to be swayed. 

    The waiting now isn’t as bad but between the dcis diagnosis and surgery you feel like you have a ticking time bomb inside you. Days were fine it was nighttime and when I couldn’t sleep I spent time getting information and views of others. Some Facebook sites do have before and after pictures that helped.

    There is an end to this I assure you. It’s just a case of keeping busy and educating yourself. 

    Sending a big virtual hug xx

  • Thankyou so so much. That's all very reassuring to hear at this point in time. Xx

  • Hi Frieda

    No problems at all. Anything else  you can think of just ask. Just think this time next month you’ll be able to advise others xx

  •  

    Hi Frieda,

    Welcome to the forum.

    I am sorry to hear that you are in such a state waiting for your surgery. Let me assure you that we all feel like this whilst we are waiting for surgery. I am glad to hear that you now have a date for your oeration and, that it's not too far away now.

    I hae had 2 bouts of breast cancer - one 9 years ago and one 10 years ago.  First time around I had a lumpectomy and I had a double mastectomy the second time. I had a mammogram, an ultrasound and, a sentinel node biopsy on my first visit each time. The operations were much easier to go through than I imagined.

    I didn't have any reconstruction, as a result of previous non-cancer-related surgery, but I have heard a number of women being upset by the length of time that they have had to wait for a reduction of the other breast.

    I hope that all goes well for you on 27th August. Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

     

  •  

    Hi Joolz,

    It's great to catch up on how far you've come in the paast 10 months. I am glad to hear that your surgery went well and that you are now looking forward to phase 2. Here's hoping that you don't have much longer to wait for that.

    Please keep in touch and let us know how you get on.

    Kind regards,

    Jolamine xx

  • Thanks Jolamine you gave great advice and were very reassuring to me. My surgeon is on maternity leave at the moment so I’m still waiting for phase 2. I’m not sure if you remember but I previously had a PE and I ended up with multiple PEs 2 weeks after the diep. Thankfully I wear a step monitor that measures heart rate and it alerted me to an increased heart rate to 140. I know you help many others so If you do see anyone on this site worried about clots I would thoroughly recommend buying one for a bit of reassurance

    Thanks again

    Jules. .

     

  •  

    Hi Joolz,

    I have had a busy time since I last heard from you. I lost my mother-in-law last September and my father-in-law in February. He went into hospital for assessment, as he was having a lot of back pain. He was admitted there and then . We were told that afternoon that he had multiple cancers and he died within 5 days. Since then we have had 3 other family funerals and, then my son broke his neck and has just had an operation to stabilize this. As a result of all this, I haven't been as active on the forum as I have been in the past.

    Maybe this is why I wasn't aware of your multiple PEs following your DIEP? - just as well you were alerted by your step monitor. It is certainly worth having one and, I will remember this if anyone is concerned about clots. Are you having to take any medication to prevent any further clots, or have your PEs just been put down as a post-surgical problem?

    I hope that it won't be too long before your surgeon is back from maternity leave and you get phase 2 over and done with.

    Kind regards,
    Jolamine xx

  • Hi Jolamine

    I’m sorry to hear about all your family tragedies. I take great comfort in believing that your in laws are together now. Medicine is amazing that they can put your son back together but it must have been a worrying time for you. 

    You gave me great support and advice when I was in limbo land. Thank you. 

     

    I’m on Xarelto/Rivaroxaban for life now but I honestly wouldn’t change a thing about my decision for a diep. The result will be amazing and my new boob although a different size at the moment, drops the same as my other one. I was worried an implant wouldn’t have that effect especially as I used to do a lot of running. 

    Keep on keeping on Jolamine. 

    Best wishes

    Joolz