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ro_obrien's avatar
ro_obrien
Member
11 years ago

DIEP undecided double mastectomy

Hi I am just wondering how other ladies came to make the decision for having a double mastectomy - one side being prophylactic. I was diagnosed with high grade DCIS mid November 2014. I have had 2 wide excision with one wound infection. I needed a third excision in increase the clear margin but opted for a mastectomy. I seriously thought of having a double mastectomy as having a DIEP in February. As I was unable to wait to have a mastectomy/reconstruction surgery, I had a single skin saving mastectomy with an expander inserted last Monday. I have noticed many ladies have opted got a double mastectomy. I would like to know if you had a high grade DCIS, dense breast tissue or BRACs gene or whether the size of your DCIS was underestimated. Was your reason a personal choice or recommended by your surgeon. The extent of my DCIS did not show up on Mammogram or ultra sound. I initially thought of the double reconstruction due to the DIEP procedure so that they will be similar and that I doubt I could go through this all again. I am experiencing a lot of pain post mastectomy especially overnight. and anxiety that everything is ok and my recovery is normal. How long does the pain discomfort last. I still have my drain in and still have about 80 -100 mls 9 days post op. Thank you ladies and wonder how long the pain goes on for until it settles.

7 Replies

  • Hi Anita

    10 days after my op I thought the pain would be reduced and be replaced by discomfort but I guess it is only early days yet.  Once the drain comes out on Tuesday things will be a lot better. It is certainly an emotional  rollercoaster ride. I had my abdominal angiogram today so my PS can assess my blood vessels prior to  seeing him next week  to further discuss the DIEP.  My PS will fine tune the reconstructed breast  and lift the natural breast in 6mths.                                                                                                                                                                           Is the lift of the natural breast also covered by Medicare?  Medibank said  that the op could be considered as cosmetic surgery and therefore not payable by the fund.  However if the breast lift of the natural breast is covered by Medicare ,  the op should be covered by Medibank .                                                                              Whilst I was in hospital recovering from my mastectomy, one of the pink ladies Volunteer  was wearing numerous Pink ribbon badges. When I commented, she told me her breast cancer involving her nodes and that she had a modified radical mastectomy 27 years ago. She is 86 years old now  and is still doing voluntary work. She was quite an inspiration. I am 60 soon and would love to be able to volunteer time when I am 86    

     

    All the best

     

    Ro

     

            

     

  • Hi Ro

    I'm 4 weeks post-surgery, I had a mastectomy and implant inserted in the same op.  8 weeks prior to that I had a lumpectomy but the margins weren’t clear, hence the further surgery. I’m not so much in pain, but very uncomfortable. Even 6 weeks after my lumpectomy I was still quite uncomfortable.

    It was never suggested to me by my BC surgeon or plastic surgeon to have a double mastectomy, and even if it was suggested I don’t think I would have done it. The plastic surgeon who performed the recon part of my surgery will do a ‘lift” in my natural breast 3 months post-surgery. After this procedure, I think both breasts will match quite well. He can also do a nipple for me in my reconstructed breast at the same time. I’m a public patient and this is all covered by Medicare.

    All the best,

     

    Anita

  • Hi Natasha.          .                                                                                                                                                             I saw my surgeon today and she told me that my pathology and lymph node was clear.  I will need nil further treatment. She told me I had a 10% chance that I may get cancer in the other breast and that it would be purely a personal preference to whether I wanted a prophylactic mastectomy.   At the end of last year, if I was able  to have the reconstruction and the same time as the mastectomy in January I would have had a double  mastectomy/reconstruction. . However as things turned out ,this was not possible and now I feel that it may have been for the best.  I  have not posted a blog until last night but just  seeing what I had written gave  me some clarity into my thoughts and ambivalence.                                                                                             As for the pain I am experiencing over night, my surgeon said it would  be from the suture in the muscle stablising the expander.  I have a large expander and  the weight of breast tissue removed was replaced with same weight in fluid in the expander. The more I think about it, it is far easier for me to cope with pain in one breast rather than both.   After you saying that in retrospect that you are glad you have one natural breast, I am now feeling the same. As I am so ambivalent, I have decided not to have a prophylactic mastectomy as I did not want to have any regrets.  If I do get cancer in the other breast  I will just have to deal with it then, so in the meantime I will look on the bright side of life  and say that I have a 90% chance of NOT getting breast cancer in the other breast.                                                                                                                                                             Thanks once again for your support and tips. It has been very helpful. I hope all goes well with your treatment and that you have a speedy recovery.  Ro.

        

  • How great that your pathology is clear and that you have no lymph node involvement.  That is such a big positive!  You must be thrilled.  

    Best wishes for whatever you decide is right for you.  It sounds like you are in good hands.  

  • How great that your pathology is clear and that you have no lymph node involvement.  That is such a big positive!  You must be thrilled.  

    Best wishes for whatever you decide is right for you.  It sounds like you are in good hands.  

  • Hi Julia                                                                                                                  Thanks for your reply. I saw my surgeon today and she told me that my pathology and lymph node was clear.  I will need nil further treatment. She told me I had a 10% chance that I may get cancer in the left breast and that it would be purely a personal preference to whether I wanted a prophylactic mastectomy.  She told me a MRI on the remaining breast at would not be beneficial and there was also the risk of having a false positive result. As everything had moved so fast for me in the beginning, I was total mess and didn't think I  would be able to cope psychologically as I  would always be worried that further cancer would go undetected.   I am only now coming to terms with my diagnosis. As I am still ambivalent about a prophylactic mastectomy,  and the thought of having pain in both breast at the same time following reconstruction, I have decided not to go ahead with it.  Just being able to express my thoughts and insecurities and hearing about other ladies' journey has been good for me in helping to come to a decision. Thanks once again for your input. Ro.

     

  • Hi, I went for double mastectomy having had BC in one but also lymph nodes. They said it was only a small chance of getting another in other breast but I wanted to feel that I had done all I could to reduce my risk.