June 2016 Surgeries!

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  • tsoebbin
    tsoebbin Member Posts: 474
    edited June 2016

    Good Morning!

    Is it typical to do a SNB on the prophylactic breast with a DMX? I have IDC in my left breast and having a DMX June 29th and I am also scheduled for a SNB on both sides. I guess I did not expect that. Is that "normal"?

    One more question... what is the difference between a DMX and BMX?

    Thank you!

  • rvgirl2016
    rvgirl2016 Member Posts: 67
    edited June 2016

    So the pain started up again after getting up this morning Scared  So the surgeon said to come in.  We agreed it was the drains causing that horrible pain, so she took them out early, YEAH!  Feel so much better now.  I'm still really tender and sore.  I had taken a pain pill before going in this morning, thank goodness!  Hurt like a SOB, lol.  She told me it normally doesn't hurt like that when removed, so she was glad we decided to remove them.  Now I need to work up the courage to start my exercises againLoopy  So far the path reports are still showing only DCIS, with a couple more in depth studies pending.  Fingers crossed nothing else is found!  Thanks so much for everyone's support, just having someone listen to your concerns and fears helps tremendously! 

  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 211
    edited June 2016

    tsoebbin, I haven't heard of a doctor doing a sentinel biopsy on both sides... Was there any indication of concern in your right? If not I would certainly call your nurse navigator or your MO to ask why this us being suggested.


    As for DMX/BMX... Never heard of DMX... So curious too! I'm having. BMX. (Bilateral masectomy) even though so far, cancer has only been directed in the left, I am opting to have both removed.

  • tsoebbin
    tsoebbin Member Posts: 474
    edited June 2016

    My surgeon's office said it is the last chance to check the SN. Once the breasts are removed they cannot locate the SN again to check it.

    The left side showed a "bit of DCIS in two locations" but when the lumpectomy pathology was done they found much more DCIS and 2 areas of IDC that did not show up on the mammograms or in the biopsies. Since it is not showing up in the mammograms on the left sdie there is concern it may not showing up on the right side at all.

    That may be why she is doing both? The nurse I spoke with said this is my surgeons standard procedure with a DMX. It just seemed odd to me.

  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 211
    edited June 2016

    If that's their protocol, they must see a need- never heard of it. I'm thinking you are using DMX as acronym for double mastectomy right? I think most use the medical term of bilateral mastectomy, which is the same thing... And the reason for that acronym!


    Good luck with your pending surgery! I though the 23rd was so far off initially... But now that it's almost here it seems like the time flew by! Not sure I'm ready!!

  • Icietla
    Icietla Member Posts: 1,265
    edited June 2016

    Friends, here is the link from which you can fill out a form to get free Lymphedema Risk Alert wristbands. It takes them a while to arrive by mail.

    http://lymphedema.com/alertband.htm

  • Dennyse
    Dennyse Member Posts: 27
    edited June 2016

    Hi, my surgery is scheduled for June 20th. Reading some threads about more extensive disease found on lumpectomy gives me cause for concern. I will keep you posted.

  • Maya15
    Maya15 Member Posts: 323
    edited June 2016

    rvgirl, thanks for mentioning pain meds for drain removal. I'm so sick of these things! At this point I feel I need to get rid of them to move on with the healing process. One of them is coming out tomorrow and I put the chances for the second one at 50/50. How do they do it? Do they just pull on the drain? I can't imagine it not being painful. Is it quick?

  • ScotBird
    ScotBird Member Posts: 650
    edited June 2016

    Maya It didn't hurt at all when my drains were taken out. After cutting the stitch which holds them in, the nurse asked me to take a deep breath, and she pulled each one out as I exhaled, it only took about 1 second and I only felt a slight pulling sensation. It was such a relief to get rid of them. No pain whatsoever! X

  • rvgirl2016
    rvgirl2016 Member Posts: 67
    edited June 2016

    Maya15, I guess everyone's pain is different with removal.  Since they were already killing me, I wasn't surprised it hurt like hell when they came out.  Yes, the surgeon just snipped the stitches holding them in and told me to take a deep breath.  They just pull them out.  Only takes a couple of seconds.  The first one hurt some, but then the second one was awful!  I think I almost broke my husbands hand, lol.  He said he couldn't believe how long they were!  She told me it usually doesn't hurt, but I have to be differentLoopy   I was very glad I had taken that pain pill!  Good luck tomorrow!  Maybe you can get both taken out so you can go forward without that nuisance! 


  • WenchLori
    WenchLori Member Posts: 1,558
    edited June 2016

    Thank you Icietla for the lymphedema wristbandwebsite! I ordered mine right away!


  • Icietla
    Icietla Member Posts: 1,265
    edited June 2016

    You are very welcome, WenchLori.

    Everybody -- get a back-scratcher!

    Those of you having lumpectomy, get very good support bras (with cups of tough woven fabric) and close-fitting sports bras to wear over them for even better support.

  • Opt4Life
    Opt4Life Member Posts: 191
    edited June 2016

    Hello ladies, hope everyone issuing well--recovering from or preparing for surgery. I had a lumpectomy and reconstruction on my left breast today. Also, 4 nodes were removed I was groggy but I believe 1 was positive and 3 negative. I knew I had at least one positive node so this wasn't a surprise. I wil have radiation and then breast reduction and a lift on the non-cancer side.

    All in all, surgery went well. I was given a nerve blocker and Percocet immediately following surgery so honestly have very little discomfort. I have been walking around the house and up stairs moving my arms as recommended by my surgeons to avoid tightness and blot clots.

    I am off from work for two weeks and will take more time if needed but since I telework a few days a week, I should be able to resume working without too much trouble.

    Some suggestions for surgery as many have already pointed out: wear a loose button down shirt to surgery, apply emla cream on the hand if that is where they are likely to place theIV, and be ready to eat crackers (I chose the sherbet for my first meal and my stomach revolted big time)

    Peace and blessings

  • tsoebbin
    tsoebbin Member Posts: 474
    edited June 2016

    Opt4life... so glad you are recovering well! Take it easy!

  • Opt4Life
    Opt4Life Member Posts: 191
    edited June 2016

    Tsoebbin, thank you. 'Taking it easy' is hard for me but I hope to do just thatat least in the short-term.

  • rvgirl2016
    rvgirl2016 Member Posts: 67
    edited June 2016

    Opt4life sounds like you've come through with flying colors!  Keep up the good work, but don't overdo Smile 


  • Maya15
    Maya15 Member Posts: 323
    edited June 2016

    Thank you ladies for the reassurance about the drains, I'm a bit squeamish. I'm down to 27cc so I'm hoping my PS cut off is 30 and not 20!

    Opt4life well done! I wish I'd been a candidate for lumpectomy but sadly I had multiple tumors so I had no choice.

  • new__me
    new__me Member Posts: 128
    edited June 2016

    tsoebbin SNB on a prophylactic mastectomy is uncommon but is done. I had a PBMX and my BS ordered it for me due to family history. She explained her reasoning like this... if she found any cancer when she opened me up she would be thankful for the dye marking the nodes. Once the breast is removed the dye won't work. So i had it done on both sides. Still i was asked by numerous med staff why i was going through it when i did not have cancer. No one ever heard of it being ordered for a prophylactic. Personally i think it was unecessary and would strongly argue against it if i had to ho through this again.

  • Langer
    Langer Member Posts: 9
    edited June 2016

    Hi everyone,

    I'm having a lumpectomy on one breast and sentinel node biopsy this Friday 17 June. Feeling horrendous on the countdown. 😢

    Good luck to you all.

  • kellychameleon
    kellychameleon Member Posts: 100
    edited June 2016

    Hey - just checking in. It's been almost 2 weeks since my BMX. and things are going pretty well. I'm still hanging in with both drains unfortunately. All of a sudden they both started having more output. Hopefully I can get them out by the end of the week. I have an appt with my BS tomorrow, who is right down the hall from my PS, so that would be really convenient if they could come out tomorrow.

    On Friday I have an appt with my MO who is at another hospital. I will find out when radiation will start - we had been talking either the end of this month or the beginning of July. I'm ready to get started with it to just get the show on the road. The sooner I finish that, the sooner I can complete my reconstruction and then hopefully be done with all of this crap and resume somewhat of a normal life!

  • pam5619
    pam5619 Member Posts: 9
    edited June 2016

    u went through the same thing I'm going through lumpsectomy now another surgery I don't understand why they can't get it all the first time I also have diabetes do not like al the cutting. Hope your surgery goes well. This will be my last time hopefully. Dx with papillary carcinoma duct in Stiu.

  • Maya15
    Maya15 Member Posts: 323
    edited June 2016

    Got both my drains out this morning hurray! It's such a relief. I can now have my first shower in 2 weeks. Until drains come out I've only been allowed shallow baths for lower body and bath wipes for upper body.

    Kellychameleon, this may not be relevant to you because every hospital is different, but I'm just back from the PS office and we discussed when radiation can start. At my hospital they require tissue expanders to be fully inflated first. She can start inflating in 2 weeks and it will take 3 or 4 fills, so she told me radiation would start 4-6 weeks from now. At my hospital they require the PS to give the go-ahead for radiation to start.

  • kellychameleon
    kellychameleon Member Posts: 100
    edited June 2016

    Maya, it is crazy how much it differs. My PS wants to do at least one fill, possibly two, before I start radiation. Then they will resume fills after radiation is complete. And I was able to start taking full on showers the day after surgery.

    I'm glad you were able to get your drains out!

    My 3 year old came back home on Sunday after rotating between my parents' and my in laws' houses. My 6 year old is still at my parents' because her cousin is in town, and they're having a blast. She's been great with not jumping on me and behaving so well. My husband has been getting her dressed, bathing her, taking her to daycare, etc. I just get to (gently) snuggle with her and enjoy having her back. We are SO lucky to have parents that live so close by that are willing and able to help out so much. I really don't know what I'd do without them.

    I'm toying around with going back to work on a very limited basis next week. I'm checking in a lot from home already, but I am so ready to have some semblance of normal. I know I shouldn't push it, but it's hard.

  • ScotBird
    ScotBird Member Posts: 650
    edited June 2016

    Kelly I just noticed that we have a really similar diagnosis and treatment and I'm a week or so behind you. I'm only on day 4 after surgery and finding it difficult take things easy too. I've been working a bit today as I can't seem to get the art of switching off. My post surgery advice was not to lift anything heavier than 1kg for 2 weeks after surgery. My handbag weighs more than that! X

  • Opt4Life
    Opt4Life Member Posts: 191
    edited June 2016

    Hi ladies,

    Langer, I too felt really nervous going into the surgery. Worked myself up into a fit, but once my BS and PS checked-in on me before surgery, I was fine. Both my surgeons are really good looking so that helped too. Try not to worry and instead think of all the wonderful things you will accomplish once you get this crap behind you.

    Maya15, yeah about the drains. I can only imagine your relief. I have one and although it doesn't hurt, it's uncomfortable and reminds me that I'm a cancer patient--well hopefully I am cancer-free now. Anyway, glad to hear you are on to the next phase.

    Rvgirl, I'm trying hard not to overdo it but since I am not in pain and still have a good energy level, I am still doing laundry, taking out the trash, and cooking.

    ScotBird and Kellychamelon, I hear you about it being hard to switch off and going back to work. It's why I didn't want to take too much time off. I want to be and feel normal again and work helps me to do that. Switching off is just so difficult for a busybee like me. I promised myself that I would do nothing for two weeks and already one day after surgery, I am pretty much doing everything I normally do but go to the gym--and that's only because of this darn drain.

    Everyone, peace and blessings


  • SthrnYankee
    SthrnYankee Member Posts: 25
    edited June 2016

    Hey ya'll! I am finding my way around & figuring this site out a little at a time...I was diagnosed May 10 with IDC, underwent bilateral mastectomy with phase 1 of reconstruction June 1, drains came out June 8, & now I'm very swollen on the left side (the cancer side)..called PS today & he's out until next week but I am going to see his partner in the am to see if this is a Seroma or what...it hurts & is very uncomfortable...it wraps around my side to my back! Any who I am not in pain other than that...I am off all hardcore pain meds & only using ibuprofen now. I had a heart scan today as I will begin chemo within the next 2 to 3 weeks. It is nice to find a place where I can come talk to people in a similar situation as me. I am 36 with no health problems before this!

  • Kawigirl1260
    Kawigirl1260 Member Posts: 60
    edited June 2016

    Maya, isn't it great to have the drains out?!?! Got mine out yesterday a.m. That shower felt SOOOOO good! My BS required 10 days minimum then <30 ml in 2 consecutive 24-hr periods, even though I was down to less than 20 ml in 24 hours on day 6. She had pulled them early on some ladies, then had a lady develop a seroma, so won't pull them before 10 days anymore. The most painful part was the numbing spray before cutting the stitches. Go figure. But I felt like I'd been sucked dry!

    Am slowly getting to my "new normal." Have to wear this surgical compression bra for another 2 weeks before getting my camisole with the "little puff ball" on the right side. The another 2 months before being released to get my breast form. My BS is VERY careful. I suppose I shouldn't complain. And I'm not. I'm glad she's taking good care of me. Just ready to get to that "new normal" and get on with things. Starting back on my anastrozole on Friday. That will help me feel a little more at ease.

    Yeah, it's hard to not overdo things. Luckily, I'm off for the summer. Well, off is a relative term. I'm a school counselor, so I'll be working from home over the summer to catch up on what I missed while out of work. But at least I can pace myself.

    Kelly, so glad you have such good help! We're very lucky to have that, aren't we?

    Hi Langer and Dennyse! Keep breathing, and welcome to The Club. Sorry you had to find your way here. But you're in great company. Take your time, ask lots of questions if you have them, let others help you out.

    Opt4Life, sounds like you're doing great! That's most excellent! I took a week off from work after my lumpectomy and was glad I did. I over did things the first few days after and then hit a wall, physically and emotionally. Taking it a bit slower now after my mx. Seems to be working better for me. I'm bouncing back a bit better this time.

    Tsoebbin, my BS did a SNB since mine was IDC. Personally, I was glad to have the reassurance that they were clean. That's just me. Talk with your BS with your questions and concerns so you can make an informed decision. It's hard when members of your medical team differ in their opinions regarding your treatment.

    SthrnYankee, hope you're feeling better soon! So hard to be healthy and then suddenly not.

    BTW, question for those of you with partners. How soon after simple mx is it safe to resume sex? After the drains come out?

    Peace! Keep breathing......................

  • Mom2fourplusmore
    Mom2fourplusmore Member Posts: 183
    edited June 2016

    Hi, my name is Nicole. I'm 43 and I am the lucky contestant of a bilateral mastectomy. My surgery is scheduled for June 30th. I have IDC and they also found another spot that is ILC so the mastectomy is my only choice. They want to do reconstruction at the same time. I really don't mind going flat but the Dr seems to think I'm crazy. I'm a little worried that the reconstruction will hide future cancer and I'm afraid it might make the recovery more painful. Am I right? I'm disappointed because I had to cancel my summer vacation overseas. And now with this surgery right before 4th of July I am missing my weekend at the lake with friends. I know I'm crazy but do you think I would be in too much pain to go? I have 4 kids an I hate that they will be sitting around the house the whole weekend. Can I pull it off

  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 211
    edited June 2016

    it's important that you advocate for what you want and make health decisions for your body and treatment plan WITH you oncology team, and not just unilaterally told by your BS/PS what will happen. Why has the plan been decided to do reconstruction at same time if you aren't even sure you want reconstruction? I would have another discussion with your surgeon- that seems ridiculous to me... A second opinion or a new surgical team may be in order- someone who will listen! Your DX stats aren't in your signature so not sure your grade etc, but generally speaking BMX isn't someone's only option.... But iit can be the best option depending on DX.

    As for your question regarding a lake holiday 4 days post op, I think it would be near impossible. You will still have wounds that have not sealed and are prone to infection...let alone gaming drains and being in a fair amount of pain 4 days post op- can't imagine would be too much fun. Can someone else take your kids so they aren't bored and you can get some rest?

  • kellychameleon
    kellychameleon Member Posts: 100
    edited June 2016

    SthrnYankee, I'm sorry you're in pain and hope they are able to help you today when you go in to see your PS. I'm a few years older than you, but I totally know how you're feeling. I've never had a health issue in my life - the only time I've been in the hospital was when I had my kids, and even then, it was totally by the book with no complications. All of a sudden having to go to multiple doctors all the time, surgery, chemo, etc. is just surreal. I'll catch a glimpse of myself in the mirror, and think "how is this my life???" But regardless, here I am, and hopefully I can get past it and hopefully back to that healthy person I was before.

    Mom2fourplusmore, I agree with Hopefloats' entire post. Don't jump into reconstruction if you're not sure that it's the right option for you. Seriously really think about what you want for yourself and advocate for it. If your doctor gives you a hard time, consult with another doctor. I HATED my first surgeon that I met with. She came highly recommended, but I just did not feel comfortable with her. I am so glad that I went for a 2nd opinion and found the right one for me. I love, love, love my doctor now.

    Speaking of, I had an appointment with her today, and she said everything is healing wonderfully and looks great (uh, I guess I have to trust her on that one!) She was like "your flaps are just beautiful." Made me laugh. We went over my path report, and as we discussed on the phone last week, the tumor had shrunk, my margins were clear, lymph nodes were clear, so all good news. On my non cancer breast, there was "focal atypical lobular hyperplasia," which is not cancerous but is at very high risk to develop cancer, so I am very happy I chose doing the BMX and removing both breasts.

    The stupid drains are still hanging in there 2 weeks post surgery. My output is between 35-45 CCs per day, and they won't take them out until it's under 25. I am SO ready to be done with them!

    Scotbird, I hear you on the lifting of things. I'm also supposed to be limiting my movement to "t-rex arms" still. I'm trying, but it's so hard, especially now that I'm feeling better.

    Good luck to everyone with upcoming surgeries!!

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