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lylyjenny
lylyjenny Member Posts: 30

I was recenly dx with DCIS. It's actually a long story. I have a surgery for fibroadenoma last October. The pathlogy result shows that it's a fibroadenoma, but at the margins, they found ADH cells. I was scared and sad for one week. 

This Febraury, one day before the valentian's day, I went to MGH for check another two fibroadenoma and doctors told me that I can ask for a second opinion of my previous pathology sample. I did, and it turns out that pathologist at MGH thinks it is actually DCIS, rather than ADH... Things are getting worse and worse...

I did the re-excision last Friday and unfortunately they found more DCIS cells and can't get a clear margin. I have two choices: lumpectomy+rads or mastectomy. I opted for unilateral nipple sparing mastectomy and immediate breast reconstruction. I'm just 24 and still want kids. I feel like rads are not acceptable for my age. Now I'm still thinking about which way to choose for reconstruction. I have really small boobs (36A), and I like the size to stay the same as original. I'm struggling between DIEP and implant. Question here: for implant, how often do I need to change it? Every 15 years? For DIEP, what is the recovery time? Is there any website that talks about the detailed precedure of surgery and recovery?

Another question is whether one surgery enough for bother mastectomy and reconstruction. I'm living with my boyfriend now and he is moving to CA this July. I really hope I can get everything done and fully recover before he leaves.....

I'm going to meet with my Surgeon Onco, Rad Onco and Med Onco next Tuesday. 

This is a great forum and thanks for sharing the information here.

Comments

  • ej01
    ej01 Member Posts: 155
    edited March 2013

    I don't have any insight into reconstruction, but just wanted to let you know that there is a breast reconstruction board on this forum...you may get more responses if you post your questions there.

  • Kd6blk
    Kd6blk Member Posts: 114
    edited March 2013

    I am older than you but I had the DCIS and double mastectomy rebuilt. It is very natural. It is warm and soft to the touch and looks pretty natural. I am very happy with DIEP FLAP. I did not get to choose the cancer, but I can choose the most natural path of attack and I am very happy I did. I did my surgery in one shot at PRMA in San Antonio, TX. They may do more of these than any other location. I was back to work within 4 weeks and I am 57 years old. I go this coming Monday for my final phase...tats for my nipples and on April Fools Day!! haha. Best wishes on your journey.

  • lylyjenny
    lylyjenny Member Posts: 30
    edited March 2013

    ej01, thanks for the info, I'll go to check that board~

    Kd6blk, that's really really useful information. I want to go with DIEP, but I'm quite slim, so my boyfriend is afraid that there may be not enough fat from breast reconstruction. He said he wouldn't want me to have another potential injury in other part of my body. So I'm thinking maybe I can use implant this time and change to DIEP 15 years later. Good luck with your last step!!

    My surgery date is finally scheduled to be Apr. 25th, three days after my boyfriend's phd thesis defense. I was always taking good care of him, and I think it's time for him to pay me back haha. 

  • LAstar
    LAstar Member Posts: 1,574
    edited March 2013

    I'm so sorry that you are having to deal with this! 24 is so young! It's so great that you caught it. I had SGAP reconstruction from my hips, and there was not much pain there. I had my mx & reconstruction done in New Orleans at the Center For Restorative Breast Surgery. They can do a lot with a little! They also have some great before & after photos on their web site. Implant reconstruction will involve separating your two pectoral muscles which is not necessary with autologous reconstruction.

  • JuliaM
    JuliaM Member Posts: 1
    edited March 2013

    Hi lylyjenny



    Sorry you have to go through this at such young age. I have LCIS, ADH and all bunch of other benign (so far) stuff. I am going for my 3rd and 4th ex. biopsies in April. Also in MGH. I am considering nipple sparing MX as well. Best of luck to you. MGH is a great hospital to be in and I am sure you are in good hands!

  • ironmagnolia
    ironmagnolia Member Posts: 85
    edited March 2013

    lylyjenny-- the PRMA group in San Antonio TX has a great website that you can explore for loads of info on breast recon. There are before and after pics, articles, videos of patients, and a couple of diaries of patient's personal experience having the DIEP flap.

    I myself am almost 4 weeks post-op from a DIEP flap with PRMA's Dr Chrysopoulo and I have been really impressed with all aspects of this group, from the Dr's bios, their years of experience, as well as the nurses and other office staff. They are really keen on education of their patients. I was discouraged from having implants after speaking with Dr C about the cons of implants.

    As for size when you don't have much abdominal tissue to work with, my BMI is right at 25 and my new breasts are beautiful. I look better than ever, even without nipples as mine could not be spared. But, I'll get those later so it's all good!Laughing

    Their website will most likely answer all your questions. Just Google "PRMA San Antonio".

  • hurleygirly
    hurleygirly Member Posts: 157
    edited March 2013

    lylyjenny, I haven't been on this board in about a year and just wanted to check in and see how everyone is doing. Saw your post and just want to let you know of my experience. I was diagnosed on my 35th birthday with DCIS of the right breast. I ended up choosing a bilateral nipple sparing masectomy, followed by tissue expanders for about 5 months and finally silicone implants. I did not have children at the time of diagnosis..in fact I got diagnosed about 6 months after my wedding. Anywho, I am just going to tell you that my experience was nothing than I expected. Surgery and expansion was not painful for me, nor was my exchange surgery. I went from a 32C/34B to a 32D/34C and my results are great...honestly. I don't even think about it anymore. I also want to tell you that I got pregnant 2 months after my exchange surgery and I now have an 18 month old girl. I did not have any other treatment but my bilateral NSM and it really was one of the best decisions in my life. I hope my story helps you. Oh and about when you need to get your implants changed...it's so different for everyone. I know women who have had theirs for 20+ years and those were the implants that weren't even as good as they are now. You never know!

  • lylyjenny
    lylyjenny Member Posts: 30
    edited April 2013

    LAstar, I'll discuss all the possible reconstruction with my ps on Apr. 10th, and hopefully we can choose the one fitting me best. I really want to recover within 4 weeks... My future parents-in-law is coming one month after my surgery. Originally we planned several trips around Boston. Don't want to miss that!

    JuliaM, good luck with your biopsy!!!! My doctor is Dr. Hughes.

    irinmagnolia, I'll check that website. These days I've been searching for patients' recovery diary to see how they are doing after the surgery. But I only found a couple of them. Also, how do you feel now? Can you walk around? Watch a movie at the theater, ect? Haha, I just want to estimate what I can do one month after the surgery.

    hurleygirly, that's really exciting news! Now I also hope to have kids right after I totally recover from this. I didn't choose bi-lateral cos I'm still thinking about breast-feeding. I'm not sure whether it's a right choice. May I ask how you found your DCIS? I'm wondering whether MRI can find DCIS. I really dislike mammogram, so I hope to use MRI as a yearly checking method of my left breast. BTW, is the baby in the picture your daughter? She is soooooooo cute!

  • 3mom
    3mom Member Posts: 45
    edited April 2013

    lylyjenny--hello thought I would share my story with you also.  I was in same exact place as you here 3 months ago.  37 years old with three little kids - had history of benign fibro's one removed with lumpectomy when I was just 19 and another at 23.  Then this year I got a new one - so went for mammo and it was shaped different than my old ones so that day they were concerned and did core needle biospy which came back as benign and I was relived but breast surgeon consult said that is was big and close to surface at nipple so should just come out.  When in for another lumpectomy - and she called me 5 days later telling me she was really surprised but all along the edge was DCIC high grade and a large amount that she would not be able to get clear margins so that phone call turned into a mastectomy.  We decided that if the mammos and u/s did not see the DCIS and was only found from biopsy would there be more .  That led to MRI which suggested more and hormone receptors came back as negative so I decided on bilateral.  I did take time though researching reconstruction - felt at least I had a choice in that.  Went to many different plastic surgeons and I am glad I did.  I really wanted to do a flap - DIEP - but had 2 surgeons say did not have enough fat and would not be happy results even though they thought it was a great procedure.  So ended up deciding on TE's - wasn't first choice but at least researched enough that it was my decision and one my husband and I felt would be best.  Had surgery 1 week ago today and have first follow up visit tomorrow.  It has been a process that is for sure but with DCIS you can take a bit of time and make the best choice that will be for you.  Then just move on and be thankful that it was caught early - that is the way I am going to look at it.  Want to watch my children grow up and rock my grandchildren some day.

  • lylyjenny
    lylyjenny Member Posts: 30
    edited April 2013

    Hi 3mom, thanks for sharing your story here! It's good that you caught it early! I'm sad with DCIS, but I would like to find it early, rather than live with it. How do you feel now? Can you walk a little? Good luck with your recovery~

  • Aridni
    Aridni Member Posts: 5
    edited April 2013

    Hi everyone, I was dx on Oct 2012. Dcis grade 2 ER/PR +. It was in my left breast. I decided on bmx because in the process I had to do a biopsy on my good breast because an MRI showed something suspicious, but thank God it was benign. I had the bmx on 11/14/12 and my exchange on 1/18/13. After the second surgery I found two small nodes under my right armpit (healthy breast), now im terrified. I get worried about anything. Did an ultrasound and it was normal. The nodes were normal and my oncologist says to not worry about it but I still do. Don't know whether or not to get a second opinion or just trust the ultrasound. They tell me it can be because of the surgeries back to back. Im just worried. Any advice?

  • Aridni
    Aridni Member Posts: 5
    edited April 2013

    Forgot to mention I am 25.

  • whonu
    whonu Member Posts: 8
    edited April 2013

    Just today I saw there was a Youtube video on reconstruction.  It appeared to be a video of the surgical procedure (or bits of it anyway).  I didn't watch the video as it didn't apply to me.  I just checked (still had the page opened) and navigated to a page that has more of what might be of interest to you.  http://www.youtube.com/watch?v=7SYgsxZ3N3A

  • Chantel
    Chantel Member Posts: 66
    edited April 2013

    LyLYJenny-

    I have the same DX- I am scheduled for bi-lateral mx with reconstruction.  My mastectomy is April 30th and you mentioned wanting to be done by July.  I just found out the expanders have to be in for 3 months minimum and then reconstruction.  It's looking to me like I will be in and out of surgeries for 6-8 months.  

  • lylyjenny
    lylyjenny Member Posts: 30
    edited April 2013

    Aridni, how did you find your DCIS? Sorry that I can't help with your new problem. Good luck!

    whonu, thanks for the linking! I'll watch it :)

    Chantel, yes I saw that information too. But exchange seems a much smaller surgery than mastectomy, so hopefully I can handle that by myself. Good luck with your surgery too!

  • Aridni
    Aridni Member Posts: 5
    edited April 2013

    Lylyjenny i found my dcis by nipple discharge. It was dark brown. Did mammogram and then biopsy. There it was!

  • Kd6blk
    Kd6blk Member Posts: 114
    edited May 2013

    I hope you are doing well. The most important thing is to do what YOU feel best about. You are so young. Best wishes in your healing.

  • lylyjenny
    lylyjenny Member Posts: 30
    edited May 2013

    Thanks a lot for all the kind replies. Just want to update my info.

    I did BMX two weeks ago and now I'm doing well. I'm glad that I chose BMX as they found a small invasive BC tumor in my "healthy" breast. I did MRI before, but it can't see it. I'm no longer qualified as DCIS member... 

    Good thing is the IBC tumor is very small and low grade, so, thank GOD!

  • 3mom
    3mom Member Posts: 45
    edited May 2013

    Wow- you hear stories like that and it seems so crazy but something's I think our intuition of what to personally do is good. How were nodes? What reconstruction did you do? Hope your feeling better. I am 6 weeks out and so much better than before.

  • lylyjenny
    lylyjenny Member Posts: 30
    edited May 2013

    My surgeon took 3 nodes on each sides and all are negative!!!!

    I'm just 2 weeks from surgery and I'm having expander right now. Really looking forward to changing to implants.

  • lylyjenny
    lylyjenny Member Posts: 30
    edited May 2013

    My surgeon took 3 nodes on each sides and all are negative!!!!

    I'm just 2 weeks from surgery and I'm having expander right now. Really looking forward to changing to implants.

    Just got my drain bottles taken off today!

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