Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

September 2020 Surgery Group

mangosan99
mangosan99 Member Posts: 38

Just booked for bilateral mastectomy on September 17th. I'm having "direct to implant" procedure so lining up two surgeons required a bit of a delay.

Hoping this remains a prophylactic surgery. Diagnosis so far is ADH with questionable DCIS in left and I opted for prophylactic mastectomy rather than doing excisional biopsy. Breast MRI showed additional concerns in left but nothing in right. My mom had breast cancer twice so I consider my ADH dx as fair warning.

Discovered all of this on mammography as I was preparing to replace cosmetic implants behind the muscle. The fact I already had implants also made this decision a little bit easier.

Anyone else scheduled for September?

«134

Comments

  • lbmantz
    lbmantz Member Posts: 1

    Yes, mine is Sept 3. I was initially diagnosed with DCIS but an MRI revealed some masses and 3 more biopsies later turned out it was IDC. I opted for a double mastectomy. Lots of luck to you!

  • mangosan99
    mangosan99 Member Posts: 38

    Thanks lbmantz! Sorry to hear you were upstaged to IDC but I guess it is best to know before deciding on treatment.

    Are you expecting to stay in the hospital or go home right away?

  • avivit
    avivit Member Posts: 2

    Hi there! My surgery is 9/10. I am getting a dmx with direct to implants after a diagnosis of ICD in my left breast, which was initially estimated at 1.1cm but the MRI actually measured 1.6cm and a few additional suspicious nodules, including one in my right breast :-(. I found my lump five weeks ago, totally randomly. The decision to get a bmx was quite easy for me, I always knew that is what I'd do if I needed to.

    Nice to meet you!

  • mangosan99
    mangosan99 Member Posts: 38

    Hi avivit! Nice to meet you! It sounds like our surgeries might be similar. Do you know if you will be staying in the hospital? I haven't had my pre-op yet and forgot to ask. It seems like a lot of surgeries are moving to outpatient with COVID and since we can't have visitors I might rather be at home if it is safe.


  • marie914
    marie914 Member Posts: 152

    I was diagnosed late July with invasive ductal in my left breast. The MRI showed another spot in the same breast with pre-cancerous atypical papilloma. I thought about double mastectomy but decided on left mastectomy with implants. The doctors try to talk me into two lumpectomies and radiation but I don’t want radiation

    They say even with double mastectomy I would go home that day. They say people are more comfortable and they can have family around. The nurses are busy and can’t give pain medicine or help us as fast as our family members can. My husband is a little bit scared of taking care of me first few days.

    I am having extended since I need large implants since I’m a large woman 😊. The skin and muscle underneath needs to stretch to accommodate the implant. He might use a Alloderm sling to help support it.

    Any advice on first few days? Any one know long it will take to get the exchange surfery

  • mangosan99
    mangosan99 Member Posts: 38

    Hi marie, glad you joined us on the sept surgery group. I looked back to the August surgery group to hear what they had to say post op. It seems like everyone is so different, even with similar surgeries. I am not planning to do TEs/exchange surgery but it seems like some people wait as long as 6 months? Maybe look at the reconstruction board and see what people say. Do you have a surgery date yet?

  • marie914
    marie914 Member Posts: 152

    I saw the plastic surgeon today and I see the breast surgeon tomorrow. It looks like they will operate on September 14 but they will confirm tomorrow with me. It could be September 28 but I really want the 14th even though it is my 60th birthday. :) I don't care about that I just want it done as soon as possible.

  • mangosan99
    mangosan99 Member Posts: 38

    marie, Keeping my fingers crossed for Sept 14th to stick. It would be nice to be well into recovery for your birthday. I'm finding a little bit of breathing room before surgery has been nice but it is getting to be a bit of a wait. Ready to move on with recovery.

  • marie914
    marie914 Member Posts: 152

    I just returned from my surgeon's office. My surgery date is September 14, my 60th birthday. I am taking two weeks off work. I can take more if needed.

    Left mastectomy and if all goes well my plastic surgeon will put in an expander.

  • mangosan99
    mangosan99 Member Posts: 38

    marie, I'm glad you got a quick surgery date.

    I saw my plastic surgeon today for pre-op; we decided to wait until I'm in recovery to see if I want to stay a night or go home. She's willing to go either way. Bad news is she doesn't allow any showering until the drains come out and estimate is 3 weeks--anticipating lots of bird baths!

    Hoping to go directly to implants but understand TEs might be an option if she's at all worried about blood flow to the remaining tissue. I guess I'll find out when I wake up.

    Still on for the 17th. So ready to get this behind me and find out the final pathology.


  • marie914
    marie914 Member Posts: 152

    Mangosan99 - My plastic surgeon and breast surgeon say I go home that day unless I have complications. No exceptions. I would stay one night. I am not sure about showering yet. I meet with plastic surgeon for pre-op Wednesday 9/9 so hopefully I find out more.

    I wanted to go straight to implants but I need heavy implants since I am a "bigger" woman :) so they said it is better to get the muscles and ligaments stronger before I put the implant straight in so they recommended an expander for me. It is so weird how every doctor does things a bit different.

    I am ready to have this behind me too. I have to have a COVID test on 9/9 too. They need to have it 3 business days before my surgery on the 14th.

    lbmantz surgery was today. I hope she comes back in a few days and lets us know how it went.

    avivit I thought of having a DMX but I figured I could do it later. I wanted to see how this works first since it sounds like I can't have direct implants. I have IDC on my left breast and they found another spot with pre-cancerous - almost DCIS in the same breast from a MRI and then I had to have a MRI biopsy on the second spot. I had a stereotactic biopsy on my first lump that I found myself 7 months after my last mammogram. They don't know how big the lump is from 1.3 cm to maybe 3 cm but my breast surgeon thinks it is on the smaller end. I am trying to avoid radiation. She is doing a sentinel lymph node biopsy in the OR and if it is positive she will take more. She doesn't expect any to test positive since my MRI the lymph nodes looked clear.

  • amyb131
    amyb131 Member Posts: 3

    I guess I will join this group...I believe I will be having surgery by the end of the month. I was diagnosed with a stage 1 ILC and a stage 0 DCIS in my left breast. I will be having a bilateral mastectomy. I met, for a second time, with my BS last week and have decided on direct to implant reconstruction. I meet with the PS on 9/17 and from there will schedule my surgery...I am feeling better now knowing I have a plan, but I am sure I will be very anxious the closer it gets. My BS said I would likely stay over night...I am dreading the drains and wondering how TE are going to feel...It’s a journey I know none of us planned on, but I am glad I can come here to read the experiences of others.




  • hnsquared
    hnsquared Member Posts: 47

    hello Ladies,

    I thought I’d join you and say hello since I’m scheduled for surgery on 9/21. I was diagnosed 2/20 after finding a lump about a month before my annual mammogram. As you can see from my signature my breast surgeon felt a suspicious lymph node at my initial appointment and did a biopsy and found a small amount of cancer. So I completed AC-T chemo which is 16 infusions on 8/5 and next is surgery.

    I’ll be doing a bilateral mastectomy, skin saving nipple saving with direct to implant. My surgery is outpatient which seems crazy but I guess better than staying over with covid. I will have radiation after surgery but won’t know the details until the pathology is back. My tumor and lymph node have responded well to chemo...we will see how well when pathology comes back. I’m nervous about surgery but I guess it’s just the next thing I have to do. Hope all of you are doing well.

  • mangosan99
    mangosan99 Member Posts: 38

    Amyb131, welcome. It is nice to have a plan, but I find it odd that I look forward to my surgeon appointments. I guess it is because I'm so anxious to know as much as possible and try to control the future.

    hnsquared, looks like you have been on this journey quite a while. Glad you could join the Sept surgery group for your next step.

    I'm hoping some of those that have had their surgeries will come back and keep us updated.

  • Colholly
    Colholly Member Posts: 7

    I’ve just been diagnosed with lobular breast cancer and have opted for bilateral mastectomy with delayed reconstruction (expanded fitted during op). My surgery should be in the next two weeks just waiting for date. Really interested to hear your experiences and share mine!

  • marie914
    marie914 Member Posts: 152

    Hello, I just got back from pre-op appointment with plastic surgeon. I had no idea they take that long I was there over an hour. Then I had to go get my COVID test at the hospital. I was there over an hour waiting to be registered was the longest part. If I have it, they will call me later today or tomorrow morning. I sure hope I don't. It was not a pleasant experience but not too bad. I wouldn't willingly go through it. :)

    Getting real - a few more days and my life will never be the same. That is how I feel. I just wanted surgery and go back to my life after a short recovery. However expanders will be in place for a few months and then the exchange surgery. Just want it to be over. I had wanted to get immediate implants but the doctor says my implants are too heavy to put in immediate and there would be danger of complications. I don't get why if my skin already is supporting my breast why will it be harder later - maybe because they cut the tendons and ligaments and muscles. ????? I don't know but I know she is the expert so I am trusting her. I think she is afraid because I am obese that I will have complications and not heal well. I weighed pretty much the same 4 years ago when I had an appendectomy where they had to open me up since it was infected and burst. I did fine with that surgery and healing. I was back at work after 1 week. Oh well. Enough venting.

    Hope everyone is doing well and will check in after their surgeries. I will try to check in as soon as I can to let you know how it went.

    It is Monday, September 14 and now the mastectomy is at 1:00 and the expander at 3:00 and then recovery for about an hour they said.



  • mangosan99
    mangosan99 Member Posts: 38

    marie,

    I was hoping for immediate implants as well but my PS will not promise that either, and I already have cosmetic implants. She explained to me that the current blood flow to my skin is provided by the tissue that will be removed during the mastectomy so when she puts the implant in to replace that tissue and there is any change in weight or tension on my skin, we run the risk of that skin dying due to lack of blood flow. She said that the body compensates but it takes a week or so which is why they fill the tissue expanders weekly. She promised to try going to direct to implant and assess the condition of my "flaps" which I am guessing is the skin without breast tissue. I too trust she will do what is best. But, I'm like you, I'm ready to move on!

  • marie914
    marie914 Member Posts: 152

    Hello all,

    I was trying to compile the list of surgeries and this is what I came up with. Please let me know if anything needs changing.

    I hope lbmantz did well during her surgery last week and she can give us an update soon.

    Good luck to avivit whose surgery is today! Praying for you.

    I see a lot of you say direct to implants but then mention expanders. I am confused I thought direct to implants mean that you get implants the day of the mastectomy (usually in front of the muscle - prepectoral) instead of an expander where you have to have the space behind the muscle expanded and filled every week or two and then have an exchange surgery where they put the final implants in and take out the expander. Please explain. :) My surgeon said I can't have immediate implants since I need large implants and I need more support behind the muscle. If in front of the muscle usually the implants are small. At least that is what she says. I am getting a 550 cc expander but she might end up putting in more in it. Then my final implant might be 700-800 cc. I don't really understand it all, but I trust her. I am getting silicone round smooth. She said for reconstruction patients they use silicone for final implant. I didn't know that I thought I heard of reconstruction patients have saline for final implants too.

    lbmantz

    September 3 bilateral mastectomy

    avivit

    September 10 bilateral mastectomy with direct to implants

    marie914

    September 14 left mastectomy with expander to implant

    Mangosan99

    September 17 bilateral mastectomy with direct to implants hopefully

    hnsquared

    September 21 bilateral mastectomy, skin saving nipple saving with direct to implant

    colholly

    sometime in september bilateral mastectomy with delayed reconstruction (expanded fitted during op).

    Amyb131

    sometime in september bilateral mastectomy with direct to implants

  • ladyc2020
    ladyc2020 Member Posts: 87

    hi everyone,

    I have my lumpectomy scheduled for 9/18, so I hope it’s ok I join in here. After that radiation and hormone treatment. Hoping for no surprises during surgery.

  • hnsquared
    hnsquared Member Posts: 47

    Marie....you are correct...direct to implant means they put in implants at the time of the mastectomy. Over the muscle and usually using alloderm with the implants to create a pocket. I usually see the term immediate reconstruction when tissue expanders are being placed at the time of mastectomy. Tissue expanders seem to be more common as my understanding is not everyone is a candidate for direct to implants.

    I look forward to hearing how those that have had surgery are doing.

    Hope you all are doing well

  • mangosan99
    mangosan99 Member Posts: 38

    Welcome Ladyc! Glad you joined us--if we have to go through these surgeries, it is nice to have company!

    marie, thank you for making the list! It seems you are up next and I know you are growing anxious but ready to get it behind you --that is how I'm feeling. I will be thinking about you on Monday.

    Friday I had pre-op for the BS where they basically want you to sign your life away in consents. We went back and forth over whether it was going to be outpatient or one night stay and agreed to assume outpatient because we can change our mind in recovery. Assuming outpatient means my husband can wait in the waiting room rather than being sent home. However, I am skeptical that the decision will make it back to the hospital--we'll see when I get to my pre-admission (and Covid testing) on Monday.

    I am as ready as I can get; just a few more things on my to-do list before losing the mobility of my upper body for a while.

  • bugg03
    bugg03 Member Posts: 1

    Hello all! I wanted to join as I have DIEP flap surgery scheduled for 23 September. I had a bilateral mastectomy last November, just before Thanksgiving. I'm a bit nervous given the length of surgery and the current COVID restrictions. I have to get a new baseline EKG since I'll be under so long. I am hoping to ask some good questions at my pre-op call with my PS office on the 16th. I wish everyone the best for their surgeries this month!

  • marie914
    marie914 Member Posts: 152

    I’m at home. Surgery was about 5 hours. I’ll find out exactly at my post op appointment. No cancer in Lymph nodes. Margins were clear. Expander was placed. Everything looked good, but it took longer. Plastic surgeon wanted to be perfect. Lol


    I woke up this ok but was woozy for awhile. The Home health nurse came this evening. I’m sleeping in recliner. I have pain hut not unbearable about 4 out of 10. Thrust though is really slow.

  • marie914
    marie914 Member Posts: 152

    I’m at home. Surgery was about 5 hours. I’ll find out exactly at my post op appointment. No cancer in Lymph nodes. Margins were clear. Expander was placed. Everything looked good, but it took longer. Plastic surgeon wanted to be perfect. Lol




    I woke up feeling ok but was woozy for awhile. The home health nurse came this evening. I’m sleeping in recliner. I have pain hut not unbearable about 4 out of 10. Throat though is really sore from tube.
  • mangosan99
    mangosan99 Member Posts: 38

    bugg, welcome! Covid has made things so surreal now in the hospital. Lots of screening makes me feel safe but the lack of visitors for a long stay would be tough.

    marie, thanks for the report! It seems like things went well--hoping for a smooth recovery now. Glad to hear your PS was so meticulous.

    Went for hospital pre-admission and Covid test yesterday. Passed the Covid test ;) I'm pretty healthy so the pre-admission was minimal--urine sample, blood sample, height/weight, blood pressure. Most helpful part was getting the lay of the land of the hospital. I'm ready!

  • crsharper
    crsharper Member Posts: 36

    Hello! My surgery isn’t until October but wanted to ask a quick question. Any suggestions on a bra for after lumpectomy?? I’m a 42DDD so not easy to find!! Thanks!! And best wishes to all of the Sept surgeries!

  • jelloelloello
    jelloelloello Member Posts: 83

    Hi! I'm Jess-- just finished chemo and having surgery next Tuesday (9/22): unilateral mastectomy (right side) along with axillary lymph node dissection (they will take all of them out). Skin-sparing because I plan to do reconstruction, but nipple-sparing is not possible because of the size (10cm) and placement of my tumor. I'm doing radiation after surgery, then was told my skin has to heal for about 6 months before I can do recon, so I'll have a tissue expander put in during the mastectomy and should be able to do the reconstruction about one year from now. Guess I'll be lopsided until then! haha

    I realize that most people go home the same day, but my hospital is having me stay overnight for observation. Not sure why but sounds good to me. No visitors allowed though, due to Covid.

    I'm planning on taking 4 weeks off of work-- what is everyone else doing? I know I probably don't need that long (esp. because I just have an office job that I can do from home), but honestly, I'm still recovering from chemo and I'm tired. I'm looking forward to time off and some good rest!

    hnsquared: Hi, friend! : )

    marie914: Glad to hear your surgery went well! Following along with your recovery to hear how it goes.

    mangosan99: I see yours is coming up in two days... good luck! Thanks for starting this group!

  • Colholly
    Colholly Member Posts: 7

    Breast surgeon appointment today - double mastectomy Within next two weeks with expander (delayed reconstruction) and they are going to try and save left nipple. However 4cm tumour may complicate this - as with everyone I won’t know until after surgery .. Good to read all your comments - it is scary but we’ll all get through it !

  • mangosan99
    mangosan99 Member Posts: 38

    marie, Happy (belated) Birthday! I was re-reading this thread and was reminded your surgery was on your birthday. :( I hope you were able to have some kind of post-surgery celebration.

    crsharper, you might want to try the thread called "Lumpectomy Lounge" for bra suggestions. I'm clueless about bras and decided to wait to see what I'm dealing with after surgery to figure that out.

    Jess, welcome! I'm planning to take at least 2 weeks off but my job is remote and part-time so it is super recovery friendly.

    Colholly, welcome! It does sound like we are all getting a few surprises when we wake up.

    Saw my PS today to be marked so she does not have to come in at 5:30 AM with the BS. She is still unsure of direct to implant vs TE and putting the implants above/below the muscle. I already have a pocket below but she is worried about animation deformity. It seems like the pros and cons of each option are about equal and depend on many factors that the PS doesn't know until surgery is underway. Fortunately, I trust my PS.

    I'll come back with an update as soon as I am coherent.

  • marie914
    marie914 Member Posts: 152

    Hello.

    I had a birthday party on Sunday. Today was my first post op appointment with plastic surgeon. She unwrapped me and she said everything looked really good. She put antibiotic ointment on the incisions and wrapped me up again. My expander has about 50 cc in it It looked ok. My husband got to come in and neither of us were grossed out lol. I come back late Friday and breast surgeon and pathology next Tuesday.

    My job is full time but remote. I took 2 weeks but can extend if needed. Not too bad so far. Drains aren’t bothering me.