April & May 2015 Surgery Sisters

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  • justmaximom15
    justmaximom15 Member Posts: 264
    edited May 2015

    My experience with the radioactive injection was not a pleasant one and it turns out that my BS didn't order lidacaine and that particular hospital requires doctor's orders. So, I had no numbing cream, no lidacaine and yes it hurt very badly but it did not last long. The nurse told me the pain would only last about 30 seconds so when it started I was terrified that I couldn't deal with it for 30 seconds. I think it was more like 10 or 15 seconds.

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

    little-k, blue dye usually passes out in the urine over 24-48 hours. Some blue staining on the breast is very common and this will fade gradually over a few weeks or months. In some cases, it takes longer. This study has some percentages on follow up, where 8.6% of the study participants showed some residual staining at the injection site after 3 years, but 36.5% had staining after 1 year. If your medical records don't indicate the staining agent used, ask your BS what was used on you. Blue dye staining agents used include Isosulfan Blue (trade name Lympazurin and also called patent blue violet), Patent Blue V (trade name Bleu Patenté V Laboratoire Guerbet and also known as E131-food colouring and cosmetics dye, acid blue 3 and disulphine blue), and methylene blue (trade names Urolene Blue or Methylene Blue Vitas). Isofulfan Blue and Patent Blue V are both triarylmethan dyes and are very similar molecules (Patent Blue V has an extra hydroxyl group). Methylene blue is much less costly than the other two dyes and it is used extensively in third world countries. My expectation would have been that methylene blue would not be used in the US to a great degree, but I was surprised to see that Cedars Sinai website references use of either Isosulfan Blue or methylene blue. I have no idea whether this is surgeon preference, or whether insurance companies drill down to this level for approval of procedures, or whether it was employed because of a known allergic reaction.

    Isosulfan blue and Patent Blue V can pose allergic and anaphylactic risk in 1-3% of patients. Methylene blue needs to be injected deeply, because it can cause necrosis of the skin with intradermal injections. It is a smaller molecule that either Isolsulfine blue or Patent Blue V, so it will stain the skin more intensely.

    The SNB procedure carries about a 4-5% risk of false negative results (after the more accurate pathological review of formalin fixed paraffin embedded slides, not intra-operative frozen section analysis), meaning that the actual first node to which the tumour drained is not identified by staining or the radiotracer. Because of the risk of complications and negative SEs of ALND, it is deemed an acceptable level of risk.

    Speaking of SNBs, I see a lot of DCIS with SNBs on this board. Every woman has to make her own decision with which she is comfortable and peace of mind is critical. Personally, depending on the extent and characteristics of the DCIS, personal breast history and whether there are any other suspicions of further disease present, I would question my surgeon to justify why this is being done, as I think the real risk of lymphedema in particular, plus nerve injury and pain, wouldn't justify the value of the procedure. If you are more comfortable trusting your BS and just want to go with her/his recommendation, that's absolutely fine. Do whatever helps you get through your BC treatment. Here's my experience and personal decision making process. I had a very small IDC, encapsulated in a fibroadenoma, with no LVI. I had been sliced and diced in the upper outer quadrant, and because I had a mini-Grand Canyon chasm, my lymphatics had been destroyed, which is a scientific proven predictor of technique failure (not surgical expertise) for SNB. There was a 20 minute consultation between the nuclear tech, radiologist and my BS on how/where to inject the radiotracer. My SNB failed and my BS wanted to make a second attempt during my BMX. After reading at least 40 journal articles on SNB and surgical textbooks and it was my opinion that the original node to which my tumour drained could not be mapped with a high degree of confidence. I have since purged a lot of that info from my brain, but I had stats and percentages and relative risk numbers up the ying-yang that I quoted to him. Yes, I knew my BS would get a mapped node, but if it wasn't the 'true' sentinel node, it served no value to me. I felt that the incremental value of the information from a second SNB (given the specific pathology and characteristics of my tumour) was not worth the risk of my two biggest fears: lymphedema and motor nerve damage. So, I told him that I would not consent to a second attempt and why. I read on a thread somewhere about conducting an SNB post-mastectomy and that this was being done by a surgeon whose area of expertise was in this specific area. I believe that the surgeon was in Boston or NYC. The lymphatic system regenerates after it is damaged, excised, or injured to a fair degree. Personally, I don't see how anyone can say with a high level of confidence that she/he can map the original node to which the tumour drained, when the original lymphatic system is long gone. Does it regenerate as an exact replica of its former self. Nope. Can they make a reasonable guess? Perhaps, but it is impossible to do so definitively with a high degree of confidence. Just my opinion. Peace of mind is the most important factor through this BC experience and it is different for everyone.

    edited to add study on blue dye skin staining

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC372871...

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

    MaryAgatha, I had a NSBMX with direct to implants. I have breezed through the sx and recovery. Depending on what size implants are being inserted under your pecs, and thus the degree to which they are being stretched, will affect your post-sx pain experience. I experienced a little bit of tightness right after the sx, but am pleasantly surprised to not have any pain or the steel band of tightness that I had seen described. I suspect that this could be attributed to TEs and a high degree of pec stretching to accommodate a large implant. What size implants would you be receiving if you go the direct to implant option? If your PS has good experience with direct to implant and you aren't looking to have a big increase in your natural size, then I think you will be fine with this option. But if you are really uncomfortable and would prefer TEs, then communicate this to your PS. You need to be comfortable and on-board with whatever treatment and procedures that will be undertaken. It's your body.

  • Midgiemoon
    Midgiemoon Member Posts: 174
    edited May 2015

    Hi,

    I am having a lumpectomy on the right side with SNB as well. I meet with my surgeon tomorrow to go over the plan, and to discuss the what if scenarios.

    The whole EKG thing turned out to be pretty comical, and I did get to Meet a wonderful cardiologist. I did call my PCP to ask that the tech and PA get some coaching!


    ~Midge


  • MaryAgatha
    MaryAgatha Member Posts: 50
    edited May 2015

    Downdog, thank you for the advice. I am naturally B and I asked to go B+/C-. My PS says considering my naturally small frame, I'm not asking to go larger than one cup upgrade, and the fact that my breasts had been stretched by breastfeeding four children, I should be able to go direct to implant without a problem. I'm not saggy but my breasts are very soft and stretchy. He said I am an ideal candidate for direct implants. He sounded very optimistic and even excited when he told me I will like how I look. After reading about all the complications that could happen with TEs and reading about success stories of direct to implants (like yours), I'm feeling more comfortable with the idea and trusting of my PS.

    One more question: Did you get an Alloderm sling? I don't know if my PS is planning on doing that or not, but it seems like a good idea.

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

    MaryAgatha, I'm sure there are lots of women who have TEs, fills and exchange surgery without complications. This board is skewed toward the negative experience side and that's OK, because BC can be extremely nasty and traumatic and it's good to have a sounding board where people who have been through it, get it, and can provide support and advice. Since you are an ideal candidate for direct to implant, I'd jump at that. You will save yourself the inconvenience of the fill process and possibly a revision surgery. You will be able to resume your normal activities sooner. My PS is a self-admitted perfectionist and I can't believe how good my breasts look at 3 weeks post-op. I was an A cup and my implants are a B on me. Direct to implant requires precise pocket work by your PS and I really don't think I am going to require a second surgery to tweak anything. I do have an Alloderm sling. By suturing this to the breast margins, it provides a better contour at the inferior, medial and lateral positions. It is very challenging to get a nice round contour of the lower pole area with muscle coverage alone. By creating an Alloderm sling, this eliminates the need to elevate the serratus anterior muscle, which must be used to create the pocket in the absence of an ADM sling, so you have fewer muscles being dissected. It also helps prevent retraction of the pectoralis major. Alloderm coverage helps make the implant less visible, particularly with thin skin and maximizes the skin envelope in SSM and NSM. The surface area and height of the Alloderm piece is directly correlated to the final implant volume and is used to predict TE volume, when used with TE placement. There is purportedly decreased post-op pain and a reduced risk of capsular contraction with the use of Alloderm. Incidence of implant migration downward and toward the armpit is reduced with an ADM sling. Alloderm is the most widely used and studied dermal matrix product in breast reconstruction. It is expensive. A lower cost dermal matrix product is Strattice, which is of porcine origin.

    Sending good wishes for your SNB procedure tomorrow.

  • AudreyB
    AudreyB Member Posts: 377
    edited May 2015

    I have my first fill apt today. Nervous and excited at the same time.

  • mysunshine48
    mysunshine48 Member Posts: 1,480
    edited May 2015


    I have expanders and have had no problems. Had 4 fills and am at 550cc's. I am wearing a Cobbie stretchy bra and no one would know any different and I am wearing tank tops. In chemo now, so after that and blood cell counts are up and normal, I will have the exchange to 650 cc. I do have Allerderm. I had skin sparing/nipples sparing surgery and I am amazed at what skilled surgeons can do.





  • lovevt
    lovevt Member Posts: 46
    edited May 2015

    4/28 NSBMX  and SNB w/ immediate reconstruction w/ PAP flap

  • Moderators
    Moderators Member Posts: 25,912
    edited May 2015

    Welcome, lovevt! How has recovery been for you?

  • lovevt
    lovevt Member Posts: 46
    edited May 2015

    Well I am at my 3 week anniversary and I wish I were further along, but everyone around me says I am doing great.  I want to get back to my normal routine because I am not used to being taken care of.  I made it to the store yesterday and came home exhausted.  It made me realize that I am not as far as I would like.  I am hoping to be back to work by June 3.  That gives me 2 weeks to build up my strength and stamina.  I do have an active job so I have to keep an open mind.  I would love to know how quickly others felt they got their strength back.  Am I better off pushing myself and being uncomfortable by the end of the day? Or am I better doing less and letting the healing happen naturally.  I am someone in the middle right now. Any ideas?

  • AudreyB
    AudreyB Member Posts: 377
    edited May 2015

    Hi everyone. Just had my first fill. It went very well and at the moment there is no discomfort. Actually feel better than before the fill. I felt a slight tingle from the needle on the left side and felt nothing on the right side. I got 100cc in each breast bringing me to 500cc each. He put in 400cc during surgery. I'm a little bigger and cleavage is starting to develop. Yay.

    One thing I was not prepared for and wanted to share. The sensation of the saline solution being pushed in caused me to get nauseous and I almost fainted. The dr and nurse said they were waiting to see if it would happen to me and sure enough it did. They were prepared, the nurse supported me while the dr finished the fill. Then they lay me down for the other side. Once laying down I felt much better and then we all joked about it. I asked if it was common and the dr said he sees it about 4 times s day. LOL.

  • mazy123
    mazy123 Member Posts: 38
    edited May 2015

    Hi Audrey, Glad you are finished with your first fill and that it went okay. Sorry about the nausea, but glad it got better once you were laying down.

    Downdog, Thanks for the alloderm info. You know so much and explain it so well.

    Thanks to my sunshine for sharing your experience with the expanders.

    Lovet, Hope you continue to heal well and get your strength and stamina back before you go back to work.

    Mazy

  • mjh1
    mjh1 Member Posts: 445
    edited May 2015

    Just got back from my graduation weekend in Iowa and see that I have missed a lot.  To all my sister's that have had sugery and that I missed, I hope you are healing well and each day will bring you less discomfort.  Warm hugs to all!!!!!

    Audrey - yay, you had your first fill.  I'm surprised to hear about the nausea.  I didn't even know that was possible.  Glad you handled it well.

  • DayLily15
    DayLily15 Member Posts: 144
    edited May 2015

    maryagatha best wishes for tomorrow :)

  • Cheesequake
    Cheesequake Member Posts: 264
    edited May 2015

    Three weeks ago I had a lumpectomy, and last night one of my internal stitches (the hard, plasticky ones that are supposed to dissolve) came to the surface and started poking out of my incision!! It's still well attached beneath the surface but it's poky enough to be catching on my bra and scraping my arm!! Going in Thursday to have it looked at.. this is a definite unexpected snag!! (Pun intended!!)

  • mjh1
    mjh1 Member Posts: 445
    edited May 2015

    cheesqake - I had that happen in both my TE exchange and revision. All my PS did when it happened was snip off the edges that were sticking out.  if your incisions are not open, then I wouldn't fret abut it too much.  you're 3 weeks out, so your suturs should be fully healed at this point.  try massaging the scar with lotion to help dissolve the stitches faster.

    maragatha -  I hope you have all clear nodes tomorrow.  Good luck!! 

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

    Welcome April sister, lovevt. How active is your job? You have a harder recovery than those of us who have TEs/implants placed with 4 incision sites and the PAP sites take longer to heal as a result of their location. I hope you don't live somewhere really hot and sweaty. If you don't have any health conditions that will delay your recovery (e.g. diabetes) and have an average or better fitness level, I think you should push yourself to build up more stamina, a little more every day. If it hurts, stop; a little fatigue is fine. Walking is great. You can't do strenuous activities with your legs or arms at 3 weeks after your procedure. Are you wearing some kind of compression bandage/garment on your upper leg? Are your legs sore/tight at the donor site? Your legs will take longer to recover and resume strenuous activities than your upper body and arms. If your job is very active and requires a lot of leg work, like leg bends and lifting, I would think you might need 8 weeks prior to returning. Best to ask your PS, who can examine you and can evaluate your suitability for a return at 6 wks, based on the demands of your job. I just did a search on these boards for PAP and all the hits were for pap smears (I don't like the bco search algorithm and didn't look more than on first page), so I don't think we have many posters with whom you can compare notes. Good luck with your recovery.

    Cheesequake, I second what mjh1 said. I had a stitch that poked out at 3 weeks and was bothersome following my Jan lx and my BS just snipped it with no concerns.

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

    Jackbirdie, hope you are feeling better today. If you're perusing our thread and feeling strong enough to reply, let us know you're ok. Thinking of you.

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited May 2015

    oh yes, downdog. Lurking indeed. But feeling so sick and frustrated I wasn't feeling I could contribute anything positive. And that's my job as an angel.

    I continue to be amazed by your encyclopedic knowledge of all things BC, coupled with an extraordinary communication ability. So rare, and so desperately needed here.

    My hat is off to you.

    And my heart is on my sleeve for all those worrying, waiting, getting stuck poked prodded and scraped. And trying to recover and get some real life back. We are living in a hard time but thanks to our sisters here it is not s dark time also.

    I am still pretty sick blech. Hocking lougies. Sometimes on myself. I'm disgusting. The antibiotics are done and ihope they are still wirking behind the scenes or I may be looking at a delayed chemo #5. Which would really suck!

  • little-k
    little-k Member Posts: 24
    edited May 2015

    Downdog, thanks for the information about the dye. You are always so helpful.

    You all are. I'm so relieved I found this forum, I am learning so much. And just being witness to so much encouragement and support makes all of this a bit easier.

    Tomorrow I meet my MO and find out about the next step - chemo. I've been on edge all day, I've been quite stressed about chemo.

    But my DH came home and took me out to dinner to help take my mind off of things for awhile. Distractions can be helpful too :)

    Jackbirdie I hope you feel better

  • marketingmama
    marketingmama Member Posts: 161
    edited May 2015

    Hello Sisters! Just dropping in to wish all successful surgeries and speedy recoveries. Also to share that I'm going in tomorrow for my PBMX (nipple sparing I hope) with reconstruction (TEs). I need to arrive about 6am for the sentinel node injection in Nuclear Medicine then my surgery is at about 8:30am. They have told me to plan for two nights in the hospital. I'm getting nervous and just wish the time would come. Dreams are weird. Sleep is not restful. Definitely obsessing over every detail though I honestly don't know what to expect. All your posts are so helpful and I feel much less alone. I also feel like I shouldn't be complaining one bit because this is a prophylactic procedure and assuming all my biopsies are clear (as doc expects), my struggle pales in comparison to most of yours. I am truly humbled by the strength and fortitude you all show. It's an inspiration.

    All the best.

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

    Sending good wishes to marketingmama, dtad and mazy123 for smooth BMX + TE placement surgeries tomorrow and optimal recoveries. Remember to keep ahead of your pain; it will facilitate healing.

  • AudreyB
    AudreyB Member Posts: 377
    edited May 2015

    Today I'm 2 weeks post surgery. I had my drains out in 6 days and my first fill yesterday.

    The expanders are no longer in my underarms. I have gotten great relief. I do feel very tight though.

    Just know every day is s step closer to where you want to be.

  • mjh1
    mjh1 Member Posts: 445
    edited May 2015

    marketingmama, dtad and mazy - Wishing you a calm and restful evening as you await your surgeries.  Hope your recovery will be smooth and uneventful.  Warm hugs!!

  • lovevt
    lovevt Member Posts: 46
    edited May 2015


    Thanks downdog. I too searched for PAP flap reconstruction and found no other posts.  Yes my job is physical.  I am a Chiropractor.  Have my own practice so I really want and need to return but I also know I need to wait until my body is ready or else I can't help anyone else.  I did push myself a little today went for a longer walk.  I had some pain but nothing unbearable.  I just have a hard time around 5-6pm, either the pain increases as the day goes on or more likely my patience wanes.  All in all today was a good day so no complaining.  I am wearing compression shorts and have them wrapped in ACE bandages on top of that.  Uncomfortable but better than the drains!

    I so glad I found this forum just to share stories and offer support to one another.  Thanks for the positive feedback and insight.

     

  • DayLily15
    DayLily15 Member Posts: 144
    edited May 2015

    Best wishes for marketingmama, dtad and mazy tomorrow, i hope all goes well :)

    Jackbirdie thinking of you, hope your boogers are gone soon !!!

    Downdog you are going to earn a degree in surgery recovery soon, your knowledge and wise filtering of information is very much appreciated.

    hugs for all !

  • Candygold4
    Candygold4 Member Posts: 14
    edited May 2015

    Lovevt - I had NSBMX with PAP flap reconstruction on March 5th with Dr. Allen in NYC. Now at 11 weeks post surgery, I'm pretty much back to normal. The backs of my upper legs are still tight, but they are no longer interfering with my everyday activities. I am able to bend and squat without a problem. I have a tiny bit of discomfort in my breasts, mostly at night, but very minor.

    While I've tried to be active from the get go, I feel like I've really turned the corner in the past couple of weeks - the only thing that still bothers me - my legs get sore if I sit in a hard chair for more than 90 minutes or so. Other than that, I'm doing great! FYI, my recovery was somewhat hampered by a bad cold and ear infection a week after surgery which lasted about 2 weeks, so my recovery may not have tracked a "normal person". At 4 weeks I was driving, running a few errands and walking about 2.5 to 3 miles (slowly) per day. By six weeks, I was walking 4 miles a day, but hills were still tough. Sometime at 7 or 8 weeks, I felt much stronger.

    I think the walking really helped me because it stretched and loosened my legs. Some days I really had to push myself to walk, but I usually felt better for the rest of the day. I still wear a Spanx when I exercise; I'm not quite ready to give that up yet!

    I have my second stage surgery in July -- looking forward to having this behind me.



  • lovevt
    lovevt Member Posts: 46
    edited May 2015

    candygold thank you so much for your reply! It is great to have someone to chat with that had the same procedure.  So I shouldn't be getting down about still feeling pain at 3weeks? Mostly in the evening? I did push myself today and walked further than I have been and I did feel better for the rest of the day especially mentally! I definitely felt more on the hills also. 

    Second phase? Fat grafting? If you don't mind me asking.  That is the only other procedure my Dr has mentioned to me so far. 

    I am so glad you feel almost back to normal and it is not that far in.  I know I will get there.  I am just learning that I am not a patient person.  I never realized that about myself before.   

  • Candygold4
    Candygold4 Member Posts: 14
    edited May 2015

    Lovevt, I too am happy to have someone to commiserate with! I was also wiped out in the evenings, but really, overall the recovery was much less painful than I anticipated. I was uncomfortable, but I didn't have a high degree of pain. Some days were worse than others, but nothing terrible -- sort of two steps forward and one step back. I don't work now, but I think if had your type of job (physical in nature), I'd want to wait 8 weeks before returning. That's just me (and remember, I was sick for two weeks shortly after I got home from the hospital, so I may have a slower recovery than you).

    My second surgery will include fixing breast scars (my doc leaves a "skin island" along the breast scar line to monitor the flap, so this will be covered, resulting in revised, and hopefully neater breast scars), plus I have a bump along one of the scars on my thigh, so that will fixed (Dr. Allen says that will be easy). I do have a small amount of necrosis in each breast which will need to be removed, plus I need to achieve a little better symmetry, so fat grafting is in order. I'm not happy with the prospect of liposuction, but I guess it's just part of the "journey". I hear it's painful for a few days after surgery. Fortunately, Dr. Allen doesn't think I will need a whole lot. I'm pretty pleased with my results so far, but I need a little "tweaking". Will you be having a stage 2 surgery?

    Hang in there -- you sound like you are doing great!

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