July 2015 Surgery Sisters

Options
1356727

Comments

  • I_Spy
    I_Spy Member Posts: 507
    edited June 2015

    Hi Plumster --

    Welcome and wow that is really interesting about the radiation during surgery. Sounds really innovative! What city are you in and where are you having it done?

  • plumster1
    plumster1 Member Posts: 270
    edited June 2015

    Hi Ispy-

    I live in Orange County,California. The surgery will be at University of California, Irvine. The margin probe thing actually sounds pretty cool too. FDA approved. BS removes tumor by what they think of course are clear margins. Then they check the edges of it with this margin probe device. It can detect if clear margins or not. Obviously not 100 % perfect. But, I guess has significantly cut down on having to go back for a second surgery to get clear margins on an Lx when used. I see you had an Lx...how was the recovery for you?

  • I_Spy
    I_Spy Member Posts: 507
    edited June 2015

    Plumster I live in San Diego! And my surgery has been/is at UCSD Moores Cancer Center. We're both at NCI designated comprehensive cancer centers which is great. No wonder you're having an innovative treatment. My recovery from lumpectomy was a breeze. I have had several major surgeries (my body likes to grow things: fibroid tumors on uterus, out it goes; cysts on ovaries, out they go; etc), and the lumpectomy was the easiest surgery and the easiest recovery. The general anesthesia was the part that takes the longest to recover from. But I had my lumpectomy on September 4th and was in school full time and work full time by September 26th. It hurts, but.... I have a high tolerance for pain, and I think women do in general. Honestly, the lumpectomy will be the easy part. :)

  • plumster1
    plumster1 Member Posts: 270
    edited June 2015
    Great to hear ipsy! Thank you for the info. I know I have a high pain tolerance too but anesthesia does make me so nauseous. Ugh!
  • I_Spy
    I_Spy Member Posts: 507
    edited June 2015

    plumster anasthesia makes me nauseated -- all narcotics do, but there is NO REASON for you to experience nausea. NONE -- ZERO. Talk to the anesthesiologist whom you meet just before the surgery. Tell him/her that you are very concerned about nausea, and that you would like a scopolamine patch. It is a teensy patch (the size of the pad of your index finger) that goes behind your ear before surgery. It sits there during the surgery preventing nausea. Also ask to have zofran at some point, or at least have it in your chart in case you feel nauseated in recovery so the nurse can give it to you if you ask for it. You can start with "I'm really concerned about nausea, is there something we can do?" and they should just offer those two things. If they don't, say your friend is a doctor and recommended the patch and then some zofran at some point (I'm not a doctor, but saying that usually works). It will completely handle your nausea. You can even ask for a prescription for zofran to take home with you -- it is my favorite drug in the whole wide world. sigh. hahaha can you tell I experience nausea?

  • MizMimi
    MizMimi Member Posts: 98
    edited June 2015

    UPDATE ON BS calling my decision to have dbl mx crazy:

    I called the office yesterday morning to tell them I now want a 2nd opinion with another BS and to NOT let the orignial BS reschedule the surgery.

    I explained what the BS said to me and they apologized for him. I spoke to the schduler and then one of the nurses. Both of them were not happy about how he talked to me and they were both very understanding of my viewpoint. One of them said that he is one of the older BS's who did not have DCIS as part of is training and that it came along after he was long out of school and that BS like him tend to disregard DCIS as not cancerous.... she said that might be why he said "It's just DCIS". HE did say doesn't consider it a cancer. She said the new BS had DCIS as part of their original training and that they usually take it much more seriously and recognize it as a cancer and are more undertanding of mastectomy for treatment if that is what the patient wants.

    A few hours later guess who calls me??? My original BS called and asked me if I was firing him. He let me explain to him how I felt about his conversation with me the night before and he apologized...sort of.. he said "If I said that, I'm sorry". I told him that I want to discuss options with a different BS and that I will then decide who does my surgery... but I'm pretty sure I DON'T want him. He has an ego and unfortunately is quite arrogant, especially when I think back to my appointment with him. I noticed some things then..... that I did not like, but did not process and/or I let them go because sometimes great surgeons are quirky or have terrible bedside manners and he's one of the best surgeons.

    I am still wanting to do a DBL MX but I am open to discussion of UMX.... but really leaning to just getting this all out and do skin sparing/nipple sparing surgery now and hopefully never having to deal with this again! I still don't want radiation... so lumpectomy is out. I will be talking to the new BS in a couple weeks and see what she is like.

    I'm going to find a BS that will respect my decision...!!

    (And WOW.. I'm still in shock at how arrogant some doctor's are! How dare I not do the lumpectomy that he recommended!! I'm so crazy!) SMH !!!

    P.S. Please put unknown surgery date on the list! I'll let you know when I get a new one.

    PSS Hugs to all you wonderful ladies!!!!!!!

  • I_Spy
    I_Spy Member Posts: 507
    edited June 2015

    Good for you Mizmimi!!! That makes total sense, and i'm so glad you pursued an explanation (and complaint). I can't believe he even had the balls to call you and ask if you were firing him. Keep going until you are completely happy with your team and you are all on the same page. People laugh at me for wanting all women in the operating room, but I just feel like only a woman knows fully what we are going through. You don't have to go that far, but I'm just saying I know how you feel and GOOD FOR YOU!

  • plumster1
    plumster1 Member Posts: 270
    edited June 2015

    Mizmimi, thanks for the info on the nauseous issue. I will definitely talk to my anesthesiologist about it!

  • jkbrca2
    jkbrca2 Member Posts: 67
    edited June 2015


    I'd like to join too if it's not too late. PBMX scheduled for July 10. I don't have a cancer diagnosis but have had a couple close calls and I'm sick of the anxiety with past 4 years' surveillance testing because I'm brca2 positive. I'm ready to get this over with. Lots of mixed emotions.

  • I_Spy
    I_Spy Member Posts: 507
    edited June 2015

    Of course it's not too late, I added you to the list. Congratulations on making a decision -- quite a feat considering none of us have a crystal ball and it is so hard to know the "right" thing to do. I still stop and think "Should I do this?" but it is taking me a shorter amount of time to answer: "Yes, I should."

    Plumster you're welcome -- that was me giving advice on nausea and anesthesia ;)

  • plumster1
    plumster1 Member Posts: 270
    edited June 2015
    Oops sorry Ispy! Thank you!
  • I_Spy
    I_Spy Member Posts: 507
    edited June 2015

    Mizmimi I fixed the date ;)

  • jkbrca2
    jkbrca2 Member Posts: 67
    edited June 2015

    plumste, I get nauseated from anesthesia too. The last time i had a surgery I got a Rx for the patch that ispy mentioned the patch from the surgeon before the surgery date. I was instructed to put it on behind my ear a couple hours before i checked in to the hospital for surgery. I also left it on for 24 hrs after the surgery while the anesthesia was still in my system. It worked so well. I'm definitely going to ask for that again. Drink lots of water after too to get it out of your system.

  • plumster1
    plumster1 Member Posts: 270
    edited June 2015
    Jkbrca2, thank you for the advice. I will definitely ask about that patch.
  • downdog
    downdog Member Posts: 1,432
    edited June 2015

    plumster1, if you get bad post-op nausea, consider requesting zofran. Do you get motion sickness? The most reliable predictors are a history of post-op nausea and/or motion sickness, followed by younger age and duration of surgery and use of volatile anaesthetics. You are unlikely to receive volatile anaesthetics for your surgery. A lx with IORT would usually not be a long enough surgery. IORT takes about 35 minutes. I get bad motion sickness in certain situations.

    My surgical history is 4 lxs, 1 laparoscopic gyno and a BMX. I've tried the patch. It didn't work for me. I had bad post-op nausea and had to take Gravol in order to even think about getting out of the bed from day surgery. Not a nice way to wake up. Zofran does the trick. If you have to go for a pre-op assessment, just tell them you get PONV (post operative nausea and vomiting) and you want zofran (if you are someone who had bad nausea before or get motion sickness). The anaesthesiologist will read your file. Remind him/her too just before your sx.

  • plumster1
    plumster1 Member Posts: 270
    edited June 2015
    Thank you downdog! I do get some motion sickness so that is great information. I met with my RO. He said my IORT adds about an hour to surgery. The radiation time is 20-30 minutes but with setting up the machine etc...so I think the whole thing is like 3ish hours.
  • Scottiemom11
    Scottiemom11 Member Posts: 1,298
    edited June 2015

    May I join? I'm scheduled for ex change surgery on 7/27.

    Scottie

  • I_Spy
    I_Spy Member Posts: 507
    edited June 2015

    Yes! Hi Scottiemom I added you to the list. :)

  • downdog
    downdog Member Posts: 1,432
    edited June 2015

    plumster1, considering your surgery is 3 hrs, you will receive volatile gases for anaesthesia, so that increases your risk of PONV. They have always been more than willing to accommodate me when I've requested Zofran. Volatile gases were only used for my BMX and I needed Zofran for all my surgeries.

  • Lj061197
    Lj061197 Member Posts: 47
    edited June 2015

    I was not given a number grade my pathology report said high grade, er 90% pr 40% I don't know what all this mean. I have pre diabetics high cholesterol and a family history of heart disease. I'm on 48

  • Free123
    Free123 Member Posts: 84
    edited June 2015

    Well, I guess you can add me too! Ugh. Surgery tentatively set for July 7. Like the rest of you, I never imagined I'd be here today.

    About 2 wks before my daughter's June 6 wedding I found a lump and was diagnosed last Monday June15th (IDC in right breast, ER+, HER?? but Dr thinks it will be negative for some reason unclear to me). It has been challenging putting on a happy face through all that but somehow I did it. My parents have been out of town since the day after the wedding so, God bless them, they know nothing yet. I have told my 3 children (18-23 yrs) and a couple of friends an edited, very positive version of what's happening. My sweet husband has been to every appointment so he know everything but I suspect he has absorbed only about 35% of the info- even though he is super intelligent, masters in math etc, it's just so off his radar as a cotton farmer LOL.

    I am choosing to do a BMX with TE and silicone implants (chemo is pending the results of the HER test and/or surgery results- I think! This info is all a little overwhelming!) Mainly bc I DO NOT want to be doing this again in 3 years or 11 years or whatever. I used to like my breasts- I was a AAA (yes, there is such a thing!) and had saline implants in '99 up to a small B cup. But I'm small overall so I've liked them. But now I just want them off! I feel like I have twinges of pain everywhere around them and they are making me nervous!!! I have an MRI on Tuesday and I feel they may find cancer everywhere. Is it normal to feel that way?? I feel I have probably always had such "twinges" in my body but only now I'm taking note of them!! I don't know!

    Like many of you I swing wildly between being "okay" and totally losing it. I had to host an engagement party last night and it seemed so odd to be discussing shoes and recipes and the weather, when I wanted to scream- BUT I HAVE CANCER!! But then I have to flip that around and tell myself not to be overly judgmental when people don't say/do what I think they should, bc you really never know what someone is going through!!! The same consideration I want from others I guess I better extend to them! Very hard at times!!!

    Since I haven't (and don't relish) telling many people, this website has been so helpful!! Thank you sweet ladies- May God bless and keep you all!

  • I_Spy
    I_Spy Member Posts: 507
    edited June 2015

    Welcome Free123 I added you to the list!

  • Knoss
    Knoss Member Posts: 3
    edited June 2015

    Hi Everyone,

    I am having a bilateral mastectomy on July 15, 2015. No reconstruction. I look forward to getting support and knowledge from all of you going through this process.

  • 123JustMe
    123JustMe Member Posts: 385
    edited June 2015
    Hi!
    I guess I will be joining this group also! Do 06/04/15. Waiting for genetic testing results.
    If genetic testing negative hoping for lumpectomy. If positive ??? I DON'T KNOW!!! Arghhh!
  • _proudauntie
    _proudauntie Member Posts: 38
    edited June 2015

    Hello ladies,

    I was previously in the June group - but surgery has now moved to July so I just scanned through the posts here. I am scheduled for July 14 UMX with TEs on the right and a reduction the left (non-cancer) breast. Dx is multi-focal IDC, have a grade 1 and a grade 2 - both ER and PR+ and HER2-.

    Mizmimi - my surgery date changed because I changed surgeons after getting a second opinion. The second surgeon didn't really have a different medical opinion - but did have a VERY different personality than the first. The first spend so much time talking about the horror stories of potential risks of having a BMX - which is what I decided I wanted after much thought, due diligence and soul searching. So I encourage you to follow your gut and do what is best for you.

    Both the original and the current BS both feel that, for me, having a BMX in the same surgery is not advisable. They don't want the potential complications of surgery on a non-cancer breast to potentially prevent any cancer treatment that might be advised once the full pathology is received post surgery and SNB. The BS I am moving forward with though, has at least offered the option of a reduction on the other breast so the asymmetry won't be as significant. As a bonus - they will do pathology on that breast too. I will still have the option of having that one removed if I choose to at a later date, so for now I will see how it goes.

    I wish all of you the best and am thankful for this type of forum. While I wish there wasn't a need for it (for anyone) its good to be among others that understand...





  • I_Spy
    I_Spy Member Posts: 507
    edited June 2015

    Hello Knoss and Proudauntie I added you. Proudauntie I was following you on the June thread so I'm familiar with your story. I wish I still understood the doctors' thought process, since most women on here having a BMX have cancer in only one breast, and are planning on chemo and radiation. However, you may have other medical situations or else the chemo etc you are planning is especially taxing; in any event, I just wanted you to be happy with the advice and decision, and it sounds like you are which is what matters. But I was following along and wondering when you were going to join us! So welcome!

    123Justme you said 6/4... do you mean 7/4? on the 4th of July? Maybe you aren't in the US at which point we'll be setting off fireworks for you on your surgery day...

  • _proudauntie
    _proudauntie Member Posts: 38
    edited June 2015

    Thanks ispy!

    The surgeons have said that based on the size of my breasts (anywhere from an F, FF or G depending on brand) the amount of time on the table and the potential for complications interfering with cancer treatment, should the pathology or nodes come back indicating its needed, are not worth taking in one surgery. I am treated for high blood pressure, and am overweight which I am sure also factor in to their decision. As you noted though - I am much more comfortable now with the approach. I could have moved forward with the original surgeon and had surgery next week, she just left such a bad taste in my mouth that I won't allow her to do surgery on me.

    I wasn't sure where belonged - whether I should stay in June or move here, so I took a bit to decide :)

    FYI - I have found some comfy front button pajamas at Sears - some of which were on clearance - I think the same makers also supply K-Mart although I didn't look there. But the material is very comfortable!

  • I_Spy
    I_Spy Member Posts: 507
    edited June 2015

    Excellent proudauntie! and that makes total sense now. I'm glad you held out for a team you are confident with. When I go to sleep on the table I want to be able to trust the people doing the procedure. We do all our homework and then we "surrender to the process" as my chiropractor says haha. Good for you on the jammies! I found this post mastectomy kit:

    http://www.healincomfort.com/

    and then I also found a jammie set (button down top and pants) on sale at Macys for cheap. it is satiny and feels luxurious and is pink. Fortunately I like pink since it appears to be "our color" now. :)

    Boy it all sounds good in theory, but I'm about two weeks away and I don't feel ready. Emotionally. I'll get there I just need a minute....

  • _proudauntie
    _proudauntie Member Posts: 38
    edited June 2015
  • I_Spy
    I_Spy Member Posts: 507
    edited June 2015

    Okay I think I'm ready. I'm losing my nipples which I think is the hardest part for me, but this morning I just decided: eh, whatever. I was obsessed with Barbies when I was little, and now I will look like one! Let's do this people!

    I'm going to pull out all of the clothes I will be wearing, like my new jammies and underwear and fluffy socks and zip up hoodies (I hate when my arms are cold but I like to sleep in a cold room), and I'm going to put them on the top of my vanity table (which I will clear of knick knacks).

    Does anyone else hate when the month ends in the middle of the week (as it usually does)? Looking at my monthly calendar which has the month on two pages facing me, I get so confused when I'm looking at something happening at the beginning of the next month. I have to turn the page and think how much time that represents. It was with a heavy heart that I realized I'm less than two weeks from my surgery date of July 7th....but I can do this!

Categories