Met with surgeon...am I weird, or what?

bfbear
bfbear Member Posts: 380
edited March 2014 in Breast Cancer #1
Thanks to all of you who wrote me about "can't sleep."

The surgeon's visit was great...she's wonderful.

At this point, I am definitely having a mastectomy on the left side, with immediate reconstruction (the affected area is over 5 cm, but still appears to be DCIS -- although she questions that somewhat since DCIS rarely shows a large, palpable lump, as I have).

Tomorrow I go back for a diagnostic mammogram and ultrasound on the right side, to re-check some suspicious stuff. But the recommendation, and I am planning to go with it, is to do a mastectomy on that side as well, with reconstruction, because without any breast tissue, there is so much less to worry about, and I won't have to take any anti-estrogen drugs.

If the pathology report from the surgery and sentinel lymph node checks comes back confirming solely DCIS, then I will not have to do chemo or radiation!! That was great news. But she did remind me that the pathology report after the surgery is what decides that (of course, those results don't come back for 4-5 days).

I meet with the plastic surgeon next week to go over the procedure, which sounds as though you basically end up with no visible scars (they "purse string" shut the area where the nipple used to be, after taking out all the breast tissue, tatoo it, and there you are: it looks like new).

The kicker is that the soonest both the surgeon and the plastic surgeon can operate together is May 6th!! She offered names of other breast surgeons in the area, but she is the only one I've even heard about -- everyone uses her and loves her, so I don't want to use anyone else. But the waiting, again, will be torture!!!!

And although everyone is all excited about the probable lack of necessity for chemo/radiation, I feel as though I can't trust that totally until after the surgery. And...I must really be sick to think this...the lack of any scars to show for all this, and maybe the lack of chemo/rad, doesn't make me feel as lucky as it should. It's like I want something to show for going through this, and the fact that I'll have breasts that look real but really aren't, feels hollow (although my husband is thrilled about the aesthetics, as well as the fact that I'm "going to be OK"). It feels as though I don't really have cancer....I'm just going in for a boob job.

Am I ungrateful and insane? I know so many of you are going through hell with all the treatment stuff and would be happy not to have to do it. So why am I so stupid? I don't know what to think about myself anymore. This is a very weird road...

Comments

  • Jeanne D
    Jeanne D Member Posts: 1,867
    I don't think you are weird.
    I don't think you are weird. You just have a lot on your mind now and are anxious. That is normal. It seems like everything is going quickly for you and that is good. Sometimes, it seems to just drag on, or, so it seems. I didn't know that there were no scars with a masectomy, so, you taught me something new. I always thought there would be. I am glad to hear that there aren't for the ones that have it. And, I don't want to put a damper on your good news, but, until you actually have the surgery, lymph nodes checked and have a MRI...you need to just wait and see. Your pathology report will determine what your exact treatment will be and your MRI report. So, just try to relax and think positive and think good thoughts! And, keep us updated please!
  • tommaseena
    tommaseena Member Posts: 1,769
    Not weird
    If you were just diagnosed and they can't get you in until May 6th that is a long wait for our minds. I was diagnosed on December 8th and had surgery February 2nd but that is because I went for a second opinion in the first week of January so my surgery time was about the same time span as yours-about a month.

    I had tissue expanders put in at the time of my double mastectomy and with the saline injections you feel like you are in adolescence again--growing bigger each time. You decide how big you want to be and then you get permanent boobs and then a few months later they reconstruct the nipple and then after that heals they do tattooing.

    The plastic surgeon will tell you all the options of reconstruction that are available to you which there are a few.

    The final treatment option will be determined from the pathology report. Not all of us have bad experiences from the chemo treatments. I have felt fine. Hair loss was the big kicker for me--I knew it was going to happen but until it happened you don't know how you will react.

    Good thoughts coming your way.
    Hugs,
    Margo
  • Ltalcott
    Ltalcott Member Posts: 119
    wait before surgery
    The wait that you are doing between this appt. with the surgeon and the actual surgery is not that long--it just feels like it. Mine was about that, with initial appt on 2/10 and then surgery (first time the surgery team could all get together) on 3/4.

    The waiting is not a good time, but when you look back it will have flown by. Others on this list have suggestions: keep working, finish up projects, read, read, read and educate yourself on breast cancers and the what-ifs that you might run into.

    My surgeon made guesses (that there would be no lymph node involvement, that I'd be ER+, PR+ and HER2-, that the tumors would be small.) I believe some were actually guesses based on my age and normal statistics, but other were based on the MRI appearance, the lack of palpable nodes in my neck or underarm.

    So try and relax and wait. (I know, that's horrible to try to do.)

    It is wierd that we don't feel lucky or relieved when we get to skip radiation or chemo, but I am in that position too, maybe. I'm waiting on my Oncotype DX score to determine chemo or not--but I might be done after this initial surgery and recovery (okay, taxmoifin for 5 years.)

    What kind of reconstruction will you have? I had bilateral DIEP flap reconstrution immediately after the mastectomies. There are several threads on that procedure.

    You're lucky you found this site early!

    Lisa
  • jakeca
    jakeca Member Posts: 92
    Yes, wait!
    It is wise to wait until after the surgery to set your mind on treatment or lack thereof. Even waiting until after surgery is sometimes not enough. My surgeon told me after surgery that radiation would be the only follow up treatment I would need and I was SO relieved. When I went to meet with my radiation oncologist he said, "Wait a minute. We need to talk." The tumor was very close to "automatic chemo" size that he wanted me to talk to a medical oncologist. The medical oncologist ordered the ONCO test and discovered my tumor was of a very aggressive nature. Therefore, I needed chemo. I'm sure my surgeon meant well by reassuring me that chemo wasn't necessary, but what a let down!

    The waiting is the worst! Once you make it through that and get started on treatment, you will feel better.
  • bfbear
    bfbear Member Posts: 380
    Ltalcott said:

    wait before surgery
    The wait that you are doing between this appt. with the surgeon and the actual surgery is not that long--it just feels like it. Mine was about that, with initial appt on 2/10 and then surgery (first time the surgery team could all get together) on 3/4.

    The waiting is not a good time, but when you look back it will have flown by. Others on this list have suggestions: keep working, finish up projects, read, read, read and educate yourself on breast cancers and the what-ifs that you might run into.

    My surgeon made guesses (that there would be no lymph node involvement, that I'd be ER+, PR+ and HER2-, that the tumors would be small.) I believe some were actually guesses based on my age and normal statistics, but other were based on the MRI appearance, the lack of palpable nodes in my neck or underarm.

    So try and relax and wait. (I know, that's horrible to try to do.)

    It is wierd that we don't feel lucky or relieved when we get to skip radiation or chemo, but I am in that position too, maybe. I'm waiting on my Oncotype DX score to determine chemo or not--but I might be done after this initial surgery and recovery (okay, taxmoifin for 5 years.)

    What kind of reconstruction will you have? I had bilateral DIEP flap reconstrution immediately after the mastectomies. There are several threads on that procedure.

    You're lucky you found this site early!

    Lisa

    You are all so great...
    Thanks to all of you for your input, continuing compassion, and total lack of judgement. As Lisa said, I am truly lucky to have found this site early on in the game. Please forgive, in advance, any all whining I put forth!

    And thanks for all of you who will be waiting with me. I truly appreciate it.

    For those who were interested: The type of mastectomy I'm having is called a "skin sparing total mastectomy." The surgeon will make a circular incision around the areola/nipple and remove it. Then she'll scoop/scrape/excise out all the breast tissue. Then the plastic surgeon will insert a gel implant underneath the pectoral muscle (I don't have enough fat in the tummy or hip area --- in her opinion, anyway!!! -- to not use the implants). After that, they use a "purse string" suture to close the circular hole, which leaves a little "button" of skin that will be the nipple (this part I am assuming. I had a similar suture at the site of my former cervix after my total hysterectomy several years ago). Then, again an assumption, she'll tatoo the areola back into existence. I'll know the details for sure after next week's appointment with the PS.
    Anyway, the result of this is scarless, since the original incision is now gathered together as the "nipple." Pretty cool, and I guess it's a relatively new way of doing a mastectomy.

    Debi
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    Pathology Report
    Not that I want to rain on your parade here, but, you need to wait until you get your pathology report back, and, that is after your surgery before you will know what type of treatment you will need. Noone knows exactly where the cancer has gone or how big it is or anything until they do the surgery and that pathology report is in. Like I said, I don't want to bring you down here or anything, but, you need to understand this. I do wish you the best of luck and hope that you need nothing further. Please let us know! Oh, and, I don't know what your doctor told you, but, even with a masectomy, you can still get breast cancer again. There is no way possible that they can ever remove all of the breast tissue. I don't know what the odds are on that, but, you should be made aware of that too. I imagine it is rare, but, it can happen. And, I was told that chemo was recommended highly for any tumor over 2cm, and, you said yours was 5cm?
  • Ltalcott
    Ltalcott Member Posts: 119
    Kristin N said:

    Pathology Report
    Not that I want to rain on your parade here, but, you need to wait until you get your pathology report back, and, that is after your surgery before you will know what type of treatment you will need. Noone knows exactly where the cancer has gone or how big it is or anything until they do the surgery and that pathology report is in. Like I said, I don't want to bring you down here or anything, but, you need to understand this. I do wish you the best of luck and hope that you need nothing further. Please let us know! Oh, and, I don't know what your doctor told you, but, even with a masectomy, you can still get breast cancer again. There is no way possible that they can ever remove all of the breast tissue. I don't know what the odds are on that, but, you should be made aware of that too. I imagine it is rare, but, it can happen. And, I was told that chemo was recommended highly for any tumor over 2cm, and, you said yours was 5cm?

    breast cancer after mastectomies
    The way it was explained to me was that there is very little breast tissue left, and it is all right at the surface below the breast skin that was left.

    So when a new breast cancer occurs, it is a lump that is right on the skin and easy to see.

    Also, in-situ cancer is different from invasive. I don't know about a 5cm in-situ, but you really will hear directly after your surgery.

    I know it seems like people are trying to worry you, but it's not that. I am waiting on the decision for chemo or not--but I'm looking at hats, reading about what to eat if my stomach is upset, making plans for working during chemo or being off if needed. I figure if I'm ready for the worst (chemo necessary), and it's the best (chemo not necessary), it's really easy shift in my head. If I decide I won't need the chemo and then do need it, the shift in my head would be terrible.

    Make a list of what's good about this diagnosis--all the research that has been done in the last 5-10 years that you get the benefit of: the law that insurance companies must pay for reconstruction: the new techniques for reconstruction that come out looking so good: the drugs that can counter-act the chemo side effects, if needed: this site, ...

    I have two notebooks: one I take to appointments and write everything down in. You'll get contact numbers, business cards, stuff like that. I also write down questions or things that I want to check out. Before I leave the appt. I always look at my list. Usually, the doctor has covered everything I wanted to know about, but not always.

    My second notebook is more of a journal. I write down what I'm doing and what I'm feeling, and I also list things to be thankful for, and list things I accomplish--if there is anything, ha, ha.

    Lisa
  • Noel
    Noel Member Posts: 3,095 Member
    I don't think people are
    I don't think people are trying to worry you, I just think the ladies are trying to share with you their education and experience with breast cancer. And, that is a GOOD THING! Noone can ever have too much knowledge about cancer. But, as most of them say here, your surgery and then your pathology report will let you know as to what treatment would be best for you. I was also diagnosed with DCIS, but, after surgery and the pathology report, it was found that I also had Invasive Ductal Carcinoma. So, just educate yourself, relax and enjoy life!
  • mmontero38
    mmontero38 Member Posts: 1,510
    bfbear said:

    You are all so great...
    Thanks to all of you for your input, continuing compassion, and total lack of judgement. As Lisa said, I am truly lucky to have found this site early on in the game. Please forgive, in advance, any all whining I put forth!

    And thanks for all of you who will be waiting with me. I truly appreciate it.

    For those who were interested: The type of mastectomy I'm having is called a "skin sparing total mastectomy." The surgeon will make a circular incision around the areola/nipple and remove it. Then she'll scoop/scrape/excise out all the breast tissue. Then the plastic surgeon will insert a gel implant underneath the pectoral muscle (I don't have enough fat in the tummy or hip area --- in her opinion, anyway!!! -- to not use the implants). After that, they use a "purse string" suture to close the circular hole, which leaves a little "button" of skin that will be the nipple (this part I am assuming. I had a similar suture at the site of my former cervix after my total hysterectomy several years ago). Then, again an assumption, she'll tatoo the areola back into existence. I'll know the details for sure after next week's appointment with the PS.
    Anyway, the result of this is scarless, since the original incision is now gathered together as the "nipple." Pretty cool, and I guess it's a relatively new way of doing a mastectomy.

    Debi

    Wow what a great procedure.
    Wow what a great procedure. I wish I had known about that one when I had mine done. I had a radical mastectomy with a tram flap reconstruction 8 months later after I finished all my treatments. My nipple was formed from skin from the hip area which the dr left just for that reason. I know you are anxious, and it feels like the days are not going by fast enough but it will be here before you know it. Take the time now to get your house in order, buy some books to read while you are recuperating and just pamper yourself a little. Keep us posted and I am so glad you found us. Hugs, Lili
  • mimivac
    mimivac Member Posts: 2,143
    Just a quick note
    Chemo is not typically recommended for DCIS, because it is not invasive and therefore not likely to spread to other parts of the body. Your pathology report after surgery will determine exactly if it is all DCIS or not. I'm glad for good news from your surgeon. You must have a lot on your mind right now and many, many conflicting feelings are normal and expected. You feel want you want to feel and keep posting here. We've all had "weird" feelings, so we understand!

    Mimi
  • rjjj
    rjjj Member Posts: 1,822 Member
    bfbear
    My surgeon at first just wanted to do a lumpectomy I had a palpable 2.5 tumor. He said radiation would be follow up for sure. I had a friend that had a mastectomy and did not to have any treatments...and i thought if i did this it would get it all. All i could think is get it all out now, i didn't want to mess around. I made the decision for left sided mastectomy. I am sure i made the right decision as i had 6 positive lymph nodes and there would have been more surgery and chemo/radiation anyway. None of our decisions can fully be made until we get the pathology report. It is good though to have several plans in your mind, do the reasearch and do what you must to battle the beast. I am hoping and praying for the easiest and least procedure/treatments you will receive.

    As for reconstruction, my Dr. told me it would be best to wait a year or so after i was finished with all chemo and radiation. So i will wait. Let us know what the report says we will be here for you always.
    hugs
    jackie
  • bfbear
    bfbear Member Posts: 380
    rjjj said:

    bfbear
    My surgeon at first just wanted to do a lumpectomy I had a palpable 2.5 tumor. He said radiation would be follow up for sure. I had a friend that had a mastectomy and did not to have any treatments...and i thought if i did this it would get it all. All i could think is get it all out now, i didn't want to mess around. I made the decision for left sided mastectomy. I am sure i made the right decision as i had 6 positive lymph nodes and there would have been more surgery and chemo/radiation anyway. None of our decisions can fully be made until we get the pathology report. It is good though to have several plans in your mind, do the reasearch and do what you must to battle the beast. I am hoping and praying for the easiest and least procedure/treatments you will receive.

    As for reconstruction, my Dr. told me it would be best to wait a year or so after i was finished with all chemo and radiation. So i will wait. Let us know what the report says we will be here for you always.
    hugs
    jackie

    Hi Jackie
    Hi Jackie, and all you wonderful women who are here with me.
    When I meet with the plastic surgeon this week, I am going to ask her about what happens if I do need to have chemo/radiation after all and she has already done the reconstruction. I'm also going to talk to the BC surgeon about. It's a good point, Jackie, and it's a question that should be addressed. Thanks.
    XOX,
    Debi
  • Eil4186
    Eil4186 Member Posts: 949
    For me chemo was probably
    For me chemo was probably the hardest part of my treatment. But if you have to have it, don't be too upset because it defin itely is doable. It would be nice though if you can get away without it. let us know.
  • cabbott
    cabbott Member Posts: 1,039 Member
    I learned early in the game that our reaction to cancer has nothing to do with the size or aggressiveness of the cancer. I was diagnosed with a rather innocent sort of breast cancer: stage 1 and of the sort that rarely leaves the breast. I had a mastectomy because it was in at least 2 spots in my breast but together they were still pretty darn small. I knew right after surgery that there would be no radiation or chemo. No matter. I still was totally freaked! My friend who had an extremely aggressive cancer called my cancer a "baby" cancer. But to me it was huge. I worried aggressively, read everything I could get my hands on to try to find the best treatment possible while she stayed calm and only did what her doctor suggested. But why shouldn't we get emotional and look into all the details if that is our personality style? All I knew about cancer at the time was that it killed people and now I had it. That was not exactly a comforting thought! My research was not always reassuring, but I have learned from it that folks with breast cancer are surviving, even thriving, in spite of the disease and treatment. Breast cancer has become much more treatable and for some of us, even curable. But even the curable kind affects our lives and our bodies incredibly and whether you only have "just surgery" (if you want to think of it that way) or more, getting diagnosed with cancer is still worth taking time to grieve and notice that life as you knew it has changed. Changed doesn't mean necessarily better or worse. But cancer diagnosis is a stunning blow that changes how we see life and ourselves no matter how big or small the cancer actually is and no matter how easy or difficult the treatment ends up in the end. Take your month to prepare yourself for surgery, to grieve what must change, and to realize that however unwillingly you were dragged into this situation that you are now a survivor.
  • Jeanne D
    Jeanne D Member Posts: 1,867
    bfbear said:

    Hi Jackie
    Hi Jackie, and all you wonderful women who are here with me.
    When I meet with the plastic surgeon this week, I am going to ask her about what happens if I do need to have chemo/radiation after all and she has already done the reconstruction. I'm also going to talk to the BC surgeon about. It's a good point, Jackie, and it's a question that should be addressed. Thanks.
    XOX,
    Debi

    I didn't know that they
    I didn't know that they would even do reconstruction if you need radiation until after you are done with the radiation treatments. I don't think they can..can they? And, what hospital is your plastic surgeon with BF? I would like to read more about her reconstructive surgery technique. I have never heard of that either. I must live in a cave or something to not know a lot of this..lol
  • Noel
    Noel Member Posts: 3,095 Member
    Bfbear
    You wrote this just a week ago and now when you write, it is a complete turn around. What happened? I admit, this posting sounded too happy and not realistic inre to what you were facing, but, you need to find some sort of happy medium. You do need to talk to someone, your doctor, call the acs, they have a 24 hour hotline. Sometimes that 3rd party that doesn't really know you, like a doctor, or someone on a hotline can be of more help to you because you can totally open up to them. So, please contact someone! And, keep posting and let us know how you are doing! We care and we have been there! And, hopefully, we can help you somewhat. A big hug to you!
  • ohilly
    ohilly Member Posts: 441
    a little surprised
    I was a little surprised by your post, but please don't take this as trying to second guess your surgeon, it's just my reaction:

    I had a skin-sparing mastectomy also, but it was definitely not scarless. They kept the skin from my breast and also used an implant. The reconstruction looks pretty good, but there are scars. My reconstruction (except for putting on the nipples and now an upcoming surgery to do the tatoos) was done in one step.

    Maybe there's something about your procedure that's different from mine that I don't know?

    Ohilly
  • Kristin N
    Kristin N Member Posts: 1,968 Member
    ohilly said:

    a little surprised
    I was a little surprised by your post, but please don't take this as trying to second guess your surgeon, it's just my reaction:

    I had a skin-sparing mastectomy also, but it was definitely not scarless. They kept the skin from my breast and also used an implant. The reconstruction looks pretty good, but there are scars. My reconstruction (except for putting on the nipples and now an upcoming surgery to do the tatoos) was done in one step.

    Maybe there's something about your procedure that's different from mine that I don't know?

    Ohilly

    I hope you are better BF.
    I hope you are better BF. But, I have never heard of a scarless masectomy either. What hospital is your plastic surgeon from? I would like to know more about this type of surgery. What is the name of your plastic surgeon too? This would be helpful to a lot.
  • ritazimm
    ritazimm Member Posts: 171
    You're not weird!
    Hi BF,
    I do not think that you are weird at all! Being thrown into the fire of having cancer si such a bazar experience that NOTHING really makes sense. It blew my mind that the doctors were in no particular hurry to get the cancer out of me. I thought I would be diagnosed and then have surgery in a week or so. Didn't happen. It was 6 weeks after the very suspicious ultrasound and 4 weeks after the biopsy that I had my surgery.

    I was very lucky to find a surgeon and plastic surgeon that I loved and trusted immensely. That makes a huge difference and if you haven't heard of the other doctors I would encourage you to stay with the doctors that you know and trust.

    It is also natural to worry about NOT having any chemo or radiation because they give us that additional security that everything has been done to prevent it's return or spreading. I had a modified radical mastectomy followed by chemo. Since my post-surgical testing showed that I had cancer within 1mm of the margin, I also chose to have radiation. The rad onc. also recommended it but left it up to me. I had decided that the only thing I was comfortable with was doing everything that I could to prevent metastasis so that I would never have to come back and say "I wish I would have...". Not everyone needs that security but that is why you will hear a million times that 'everyone is different' and it is true!

    Many times while going through the cancer, I thought I must be losing my mind, but I have found that many of my thoughts and emotions were very similar to what others went through.

    I too had immediate reconstruction. For me, it was the only thing that felt right. I had a tissue expander placed at the time of the mastectomy followed by chemo. I then had to have the tissue expander switched out for a saline implant so that I could start radiation. My rad onc did such a great job that I had no burns and very little contracture of the implant so my next step will be a DIEP flap in August. I know some people think that you cannot have radiation if you start reconstruction right away, but they are incorrect. I work in a clinic and over heard the oncology nurses complaining that someone had reconstruction right away and now they wouldn't be able to have radiation. So even the oncology nurses weren't up to speed on this issue. Just listen to the doctors that you trust and trust that they know what they are doing. And if you are not SURE, get a second opinion!!! It was my second opinion where I met the two most wonderful doctors that I trusted my life with.

    God bless!
    Rita