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

  • Thanks CCPT for your quick reply. So did you not have a lumpectomy initially? Was you DCIS detected on a scan? 
    My DCIS only showed when they did the histology following a ductectomy .. it wasn't detected on 2 mammograms or U/S scan.

    6cm is similar in size to mine then! Just would be happier possibly if they took everything to do with the ducts out. My maternal aunt died from BC and it's a worry that even after a second lumpectomy it might reoccur . I find 
    it interesting that your consultant offered a mastectomy. 
     

  • I'm still off work so I've a lot of time on my hands!

    i was getting hot flushes, thought I was heading into menopause (I'm 48) so wanted the HRT. Went to my gp who was happy to administer it after standard bloods and threw a mammogram in for good measure, wasn't standard to do that. The DCIS was detected on the mammogram, couldn't see it on the ultra sound. Went for a biopsy and following that was told mastectomy was the best option. I went on to have an mri where everything was confirmed. Then had the sentinel node removed to check if it had spread, thankfully it hadn't. Then just had the mastectomy and reconstruction same day. Lumpectomy was mentioned but was told all tests indicated the DCIS was 6cm and aggressive even though it was caught early. Said they could try a lumpectomy but there was a good chance they'd have to do more and I would most likely end up getting a full mastectomy. It's tough, but I'm glad now, over the worst physically. From what I've learned everyone is different so maybe yours is closer together, Mine was widely spread. I'm on tomoxifen for three years, no chemo, no radiation. So in a lot of ways very lucky. I didn't always feel lucky but overall I really was. X

  • That's all really useful information ... Thankyou for sharing! I'll know more perhaps when I get the results back from my next surgery. 
    My MRI also showed an enhanced 7mm lesion in my other breast which they were going to biopsy but couldn't find it on the U/S scans to do it so they said they'll do another MRI in 6 months. It does seem never ending to get closure! Maybe I'm too impatient! 

  •  

    Hi Tink,

    Welcome to our forum. I am sorry to hear about your diagnosis. I am not a doctor but there are a number of different factors which determine the best treatment for each individual. These can be the age and general health of the patient, the type and grade of breast cancer, whether or not the cancer is aggressive and how widespread your DCIS is.. This might determine the difference in treatment between you and CCPT.

    Certain types of cancer do not show up well on mammogram or ultrasond. I had mucinous carcinoma and this is one of the types that is difficult to detect by these methods. I am sorry to hear that you have to have reexcision, as your margins were not clear. I have had 2 bouts of breast cancer in the past ten years. I initially had a lumpectomy, followed by Tamoxifen. A year later a second lump was found in the same breast and I had a double mastectomy followed by Letrozole for 6 years.

    After my first operation, my surgeon assured me that although my margins didn't look clear when sent to Pathology, he had been aware of this at the time of surgery and that he had taken more away. I attended a different surgeon second time around and both he and I suspect that the first surgeon still didn't take a wide enough margin and that this is why I had the second cancer so soon after the first. i know that it is a nuisance, but you are better to have your reexcision now rather than later.

    I do hope that it all goes well for you.


    Kind regards,

    Jolamine xx

  • Jolamine, how are you doing? You're so good getting back to people on these forums. X

  •  

    Hi CCPT,

    Many thanks for asking. I am fine.I saw my GP on Monday and told her that I still hadn't got my scan results. She was able to trace them on the computer and there is nothing all that untoward. I have demyelination of some of the nerve sheaths, which could give me some early signs of Dementia - just another challenge to cope with!

    How are you getting on?

    Kind regards,

    Jolamine xx

  • Jolamine, sorry only getting to this now. I'm good, ten days to my next op, feeling fine right now. Can't believe it's ten weeks since my mastectomy, it's amazing how my body has healed, though I didn't feel like that in the first few weeks. No patience. Lots of hot flushes from the meds, I'm like walking furnace!

    sorry to hear that, could be maybe means won't? Just another worry to add to the list. ️

  •  

    Hi CCPT,

    I'm glad to hear that you have had your mastectomy and are healing well. The first few weeks are hard, but that is behind you now. What is your next op for?

    I was prescribed Venlafaxine (a mild antidepressant) for the hot flushes. It didn't stop them, but it certainly made them more bearable. 

    I'm hoping that the could be means won't, but whatever will be will be.

    Kind regards,

    Jolamine xx

  • Next op is to have the other one reduced, there are 3 cup sizes in the difference! Wearing an insert for now. Purely cosmetic but I haven't even let my husband look and won't until I look more balanced. Mentally it's taken it's toll but I'm getting Counselling and that's helping. Just sent an email to the oncologist to see if there's anything I can take for the flushes, don't want to chance anything over the counter in case it interferes. 
    Sure look, it's a waiting game, one day at a time. X

  •  

    You'll feel better when they're both the same size. It does take some gettiong used to, but you'll come to terms with it eventually. Do you have much scarring and how did you cope with reconstruction?

    I am glad to hear that you are seeing a counsellor and that this is helping. Here's hoping that your oncologist can come up with something for the flushes. You are right not to buy anything over the counterand to run any meds by your oncologist first. Even some of the homoeopathic medicines can counteract with some cancer meds.

    Here's hoping that all goes well for your next surgery.

    Kind regards,

    Jolamine xx