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Shattered- Failed Re excision

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Dhanno
Dhanno Member Posts: 33
edited August 2018 in Breast Reconstruction

My re excision report shows 18 mm of DCIS on inferior margins.The surgeon said he cant do third re excision as doing it means taking whole breast tissue and it will be as good as mastectomy .He said that his experience says that there is a lot DCIS around .Already he has taken a 9 cm wide margins

Mastectomy was not what I expected that I will end up with .The BS said I am not a candidate for DIEP as I do not have body fat .I will get an appointment with Plastic surgeon after 2 weeks

I am really depressed but when I think of ladies who choose mastectomy by choice it gives me assurance that may be by default God is doing good for me.

Anyone out there who had mastectomy and do not regret that decision .

The breast cancer journey is so over whelming to the point that now I have become numb .Today I am not even crying .

Please all of you help me .

Comments

  • borogirl
    borogirl Member Posts: 30
    edited July 2018
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    In the past 9 months I have had 5 biopsies for suspicious things.  I have been lucky in that there has not been any malignancy YET, but with family history and finding of hyperplasia, complex sclerosing lesion, extensive sclerosing adenosis, and focal atypia, I have decided to do prophylactic bilateral MX and will do implant reconstruction.  I was a basket case waiting on June biopsies, as ultrasound finding looked very suspicious for cancer.  I broke down several times, almost hysterical crying, scared, and not knowing how to handle it.  It takes time to go through the process - anger, grieving, sadness, fear - and we all go through it at our own pace.  I pray daily for God's peace, and for acceptance of whatever is to come, but also to thank Him for the opportunity to deal with all of this before it could become much worse.  Because of the amazing technology we have today, things can be found earlier, and dealt with easier than in our grandmother's day.  I research as much as I can, because for me, knowledge and information is power, and helps me understand what is to come.  I feel in better control of the situation that way, and I also am prepared with questions for my dr.s when I meet with them.  I will pray for you, for comfort and calm as you cope with this.  So many wonderful women on here with so much information to share and help us all.


  • Dhanno
    Dhanno Member Posts: 33
    edited July 2018
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    Hi borogirl

    You are a brave woman .Not every one has the courage to take such a big decision .Thanks for taking time and replying .Can I also know how old are you and why you are choosing implants ?

  • Dhanno
    Dhanno Member Posts: 33
    edited July 2018
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    Hi borogirl

    You are a brave woman .Not every one has the courage to take such a big decision .Thanks for taking time and replying .Can I also know how old are you and why you are choosing implants ?

  • Lula73
    Lula73 Member Posts: 705
    edited July 2018
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    No regrets whatsoever. Also, if the surgeon who told you you’re not a DIEP candidate does not actually do DIEP surgeries, he is not qualified to determine if you’re a candidate or not. (FYI-most surgeons doing lumpectomy work are not microsurgeons). Additionally, there are other areas they can use besides tummy like hips and butt. Check out the before & after pics from NOLA in the link below...plenty of thin women.

    https://www.breastcenter.com/result-photos/


  • Dhanno
    Dhanno Member Posts: 33
    edited July 2018
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    You are awesome Lula73 .Love your clarity . Your reply was like oxygen to my soul .

  • borogirl
    borogirl Member Posts: 30
    edited July 2018
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    I just turned 61 (although I feel more like 51). I tested negative for both BRCA genes, but risk factor is up to at least 40% and my mom had DCIS with lumpectomy and radiation. I decided I didn't want to constantly be worrying about this every 3-6 months as they do mammograms, ultrasounds, etc. to keep checking. I also didn't want to have cancer show up at some point, and then have to deal with radiation, chemo, etc., AND still have to do MX. I am fortunate to be able to deal with this on my own terms. I originally had hoped to to DIEP reconstruction, but it is higher risk and no surgeons do that in my town, and I couldn't see traveling to another state for such major surgery and then how do you deal with follow ups? I really like both my breast surgeon and my plastic surgeon. I have an appt for the end of this month with PS to discuss nipple sparring, and maybe even pre-pectoral implants or if really lucky, immediate final implant pre-pectoral. I'm not looking forward to dealing with TEs, but I want to look as normal as possible when this is all done. None of us want to have to deal with this, but I'm trying to make the best of it and being proactive. A Previvor!

  • Sassa
    Sassa Member Posts: 98
    edited July 2018
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    Not only did I opt for a modified radical mastectomy, I also grabbed my chance for a simple mastectomy on the remaining breast when I had a BIRAD 5 classification on the remaining breast six months later (pathology report of that breast found no cancer).

    I never regretted for a moment having the mastectomies and went gloriously flat until I decided to do reconstruction two and a half years later with implants. Love the implants and the added bonus of never needing to wear a bra again.

  • veggal
    veggal Member Posts: 261
    edited July 2018
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    I chose a BMX for 6 mm of DCIS for many of the same reasons listed above. I did implant recon as I am thin (BMI 19 at time of surgery) and I also have an autoimmune disease and was worried about the longer surgery, infection risk, etc. Now two years later the AI disease is stable, and I think I would have pursued the flap stuff a bit more aggressively if I could "go back." It is always best to be able to choose among options.   Still, I have zero regrets about my decision to be surgically aggressive. 

  • Dhanno
    Dhanno Member Posts: 33
    edited July 2018
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    Thank you borogirl for coming back to reply .Please do update when you are done with your surgery

    Hi Sassa How is your experience with implants now .Some ladies in this forum are very disillusioned with implants that really scares me . Then I think it takes time to get used to anything new in your body .After my second lumpectomy my breast were so small round and high up that it almost felt like a new structure has been attached to my body .I felt normal only when I wore the bra .So I dont think I will miss them if I get a decent reconstruction .I think everthing happens for a reason . My two failed lumpectomies mentally prepared me for the mastectomy .Now I do not have the guilt that I could have preserved them.

    Hi VegGal You only had 6mm DCIS .You were a perfect candidate lumpectomy. Yet you went for mastectomy . What a fool I am .Final report shows 7 cm DCIS and I like an idiot I was expecting clean margins .Even best surgeon in the world could not have saved them .Wish I was mentally strong like you . Lula73 reply helped me lot .I am in Brisbane .I am undergoing treatment in a public hospital (Healthcare in Australia rocks ) but since I cannot choose my plastic surgeon in the public system I have decided to go for private consultation .The breast surgeon was adamant that implant is the only option .I will find out from the plastic surgeon if other options can be explored. If not then I will go ahead with the implants Other wise in the public hospital I have accept what ever the PS in public hospital recommends .

    Yesterday when I left the consultation room with my reports I met a lady with whom I had a friendly conversation before our surgeries. She had her lumpectomy around the same time as mine .Fortunately everything went right for her .When I told her my status she took me to a corner .She said that her family doctor(GP) who is only 40 years old was surprised that why the BS did not give her option of mastectomy .Her family doctor herself had mastectomy with reconstruction done 4 years back .She told me that the lady doctor is full of life and a very positive person .

    I want to thank you all for helping me .I think there is a little bit shallowness in me that clouds my decisions and creates self doubt .This forum is my life line .My husband and the women on this forum is the reason I did not crash

    Thanks again for giving your insight ,

  • Lula73
    Lula73 Member Posts: 705
    edited July 2018
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    Dhanno- we are all here to help! On DIEP flap and public hospitals/doctors and private hospitals/doctors in Australia, here’s a link with some really good information. Dr Sharp is a microsurgeon in Brisbane. I’ve not seen his work but he has a very informative website that can help you navigate things. Good luck! 🍀

    http://www.plastic-surgery-brisbane.com.au/diep-flap-breast-reconstruction/


  • Wink22
    Wink22 Member Posts: 23
    edited July 2018
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    Hi Dhanno and others:)

    Your post struck a chord with me as I am now waiting on mastectomy after lumpectomy with failed re excision for extensive DCIS in one margin (IDC successfully removed with first surgery). I remember feeling so sad and scared when mastectomy was advised. It took some time for me to really process what needed to happen. Now, months later, I really am ok with it. I am having LD flap recon with implants. Good luck with your decision making, thinking of you as i know that it is a challenging time.

    I’m in Australia as well, Busselton WA

  • Lula73
    Lula73 Member Posts: 705
    edited July 2018
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    Wink- have you checked out the LD thread. Definitely do so well before surgery.

  • Wink22
    Wink22 Member Posts: 23
    edited July 2018
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    Thank you Lula:) I will check it out. This site is amazing for the info and support xx

  • Dhanno
    Dhanno Member Posts: 33
    edited July 2018
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    Hi Wink22 Did your BS ordered a MRI before lumpectomy .In my first consult I had asked him if MRI is needed He said not required .Most of the ladies here on this board are from USA and there I think it is must before surgery .

    I feel if MRI had been done then it would have picked up DCIS .Then surgeon would not have operated blindly with guess work .Sadly I cannot turn back time now .May be everything happens for a reason .

  • Wink22
    Wink22 Member Posts: 23
    edited July 2018
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    No, I didn’t have an MRI...was diagnosed at biopsy. In my limited experience, not a lot of people have MRI here prior to surgery. I did ask about it, but my BS said it was not routinely done.

    :) Wink

  • Molly50
    Molly50 Member Posts: 3,008
    edited July 2018
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    I had a lumptectomy first. When my BS got in there it turned out I had extensive LVI and was impossible to get clean margins. She removed the tumor and then at my post op told me I needed a mastectomy. I chose UMX first but later found out I have a genetic mutation that increased my chances of a new BC at 28% so I ended up removing the other breast later. I had radiation on the cancer side due to positive lymph nodes so it was about 1.5 years of having the tissue expander in place while waiting to do exchange to implants. I am relatively happy with my decision because I don't have to have all the surveillance but honestly I am not happy with the way I look. If you can, see a doctor that specializes in DIEP and see what they say. Not all PS (in fact very few) do DIEP.

  • oxygen18
    oxygen18 Member Posts: 10
    edited July 2018
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    Dhanno,

    My entire health care team and second opinions were unanymously for lumpectomy. I chose mastectomy and am entirely pleased with the decision. The advantages to me were, no radiation, comparable reduction of recurrence risk as with radiation, and less worry about new cancer; and 50% discount on mammograms (I am kidding about discount :)

    At NO time did I regret my decision. By the way, besides skipping radiation, I also skipped reconstruction, am ok with my current natural state, I have fancy prostheses to choose from, and a lifetime option to reconstruct if the spirit moves me.

    I hope you come to be at peace with the idea of more extensive surgery than originally anticipated.

  • lisey
    lisey Member Posts: 300
    edited July 2018
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    I had a Mastectomy and no reconstruction (tried the TE/implant route but it felt wrong to my soul) .. but wanted to just jump in and say that I too didn't qualify for autologous tissue transfer due to being thin.  There are women ROCKING being flat who are slender and honestly we can look like ballerinas. I had HUGE boobs and people just think I lost weight.  Don't be depressed, you will find your way.    Also, new studies show that women with dense breasts are more than 6 times more likely to get BC, so if you happen to have had dense breasts, then mastectomy is a natural choice just given the odds.  I wouldn't want to keep my breasts, they were trying to kill me and the mammogram missed the tumor - how could I trust it again? 


    image

  • Dhanno
    Dhanno Member Posts: 33
    edited July 2018
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    Hi Lisey You are a beautiful woman and perhaps very young .Younger generation is more fearless compared to my generation. I am 46 years old .

    This is that phase of my BC journey when I am actually having a nervous break down .When I was first diagnosed I felt that treatment plan was pretty simple lumpectomy then radiation and all done .Mastectomy never crossed my mind .This is a shock period of the BC journey . A sense of helplessness and shock . Decision making is the hardest part .Implants or no implants .DIEP or Implants .No Implants No DIEP . UMX or BMX .

    Hi oxygen18 Thanks for responding .Breast Cancer is really driving me crazy .I want to escape everything from radiation to mastectomy to what ever .I admire to your confidence to make your own decisions .

    Hi Molly50 Thanks so much for replying. Congrats for finally getting done with the process of BC treatment . I will talk to the PS if DIEP is possible .If not then I will go for implants .There are so many threads on this board about women who are not happy with implants .But DIEP is such a long surgery that it scares me .

  • LisaK12
    LisaK12 Member Posts: 18
    edited July 2018
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    After DCIS stage zero diagnosis and two lumpectomies without clear margins my BS recommended mastectomy because the DCIS appeared to be multifocal. I took my time, got a second opinion, consulted a plastic surgeon and radiation oncologist, did lots of research, and ultimately opted for bilateral mastectomy with immediate, direct-to-implant reconstruction with smooth round silicone implants placed above the pectoral muscle, using AlloDerm. I have no regrets. The surgery took about five hours. Immediately after waking up from the surgery I was able to raise both arms above my head with full range of motion. I was thrilled to avoid having tissue expanders and it was nice to wake up with breasts that were about the same size as my real ones (they removed about 530 ccs of breast tissue from each side and put in 550 cc implants). Pathology results showed extensive DCIS in the left breast in areas that had previously not showed up on imaging, and in the non-cancer side the pathology showed I had lobular carcinoma in situ, atypical ductal hyperplasia, and indtraductal papillomas, none of which had been found on previous mammogram, ultrasound, or MRI, so it turned out that going bilateral was a good decision for me because I probably would have ended up with cancer in the other breast as well. I was up and walking around in the hospital the day after the surgery, and was discharged the following day. I did have painkillers while in the hospital but post-discharge the pain was manageable with just Tylenol. Two drains came out after 6 days and the other two drains after 13 days. The drains were the worst part. I love that I am cancer free and did not need to have radiation. I was not able to keep my nipples and I do miss them but plan to get 3-D nipple tattoos by Vinnie Myers once my scars fade more. I was able to travel internationally six weeks after the surgery. I am now three months post-surgery and the scars are beginning to fade nicely and I feel like I am getting more comfortable with the implants. I did not like having to wear a bra 24/7 while I was healing but now I am starting to be able to go braless much of the time which is a nice bonus as I always hated wearing a bra. Good luck with whatever you decide.

  • lisey
    lisey Member Posts: 300
    edited July 2018
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    Hi Dhanno, I'm actually right there with you.. I"m 43.  I was 41 when this was diagnosed.  That picture was taken last fall when I was 42.  It's hard to think another journey has begun.  I'm scheduling getting a hysterectomy/ooph and that is another turn in the road I just wasn't expecting nor want.  I'm worried about what it will do to my body and marriage.. but I press onward knowing that I'll adjust and depending on my attitude about my situation can rock through it.  You can do this too..  research all your options.  Join FB groups, including Flat and Fabulous, DIEP, recon...  You'll see true photos and true experiences about all the procedures.  It's one of the reasons I ended up going flat, was due to hearing from other women.   : ) 

  • Wink22
    Wink22 Member Posts: 23
    edited July 2018
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    Lisey, you look great. Sorry to hear that you are facing more surgery now. What a rough road BC is. X

  • moderators
    moderators Posts: 8,085
    edited July 2018
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    We are looking to interview, and possibly feature in a video, people who have had a revision/corrective breast reconstructive surgery at the Center for Restorative Breast Reconstruction in New Orleans, and are living in the Mid-Atlantic region of the US. If this applies to you, and you are interested, please contact the Mods and let us know a little bit about yourself, including your age, city/town and state, and a few details to what you had completed at the Center.

    Thank you!

  • Dhanno
    Dhanno Member Posts: 33
    edited August 2018
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    Just an update .I finally had my mastectomy on 14 Aug .I met my BS to discuss the pathology report And guess what ? There was no cancer .The path report says There is no evidence of malignancy . My BS was very embarrassed as he was very confident that I may have more DCIS and may have to go for radiation . So basically I could have saved my breast but both the BS and radiation oncologist made me believe that my cancer was multi focal and widespread .

    I told the BS that sometimes it is better to listen to patients instincts .Although I have a sense of loss about losing my breast but I am still fine .Breast cancer is very tricky .I feel more and more ladies should be encouraged to come to this board before starting the treatment .Sorry to say but the ladies on this board are more intelligent and have more common sense than most of the doctors I met during my BC ordeal

    So finally I am done with mastectomy and good part is that I will not need radiation . Just a month back I was so desperate to save my breast but surprisingly I am taking it well .Next step Tamoxifen. Hope I tolerate it well