April 2016 Surgery

Eleanora23

Evening All!

I did indeed have my Lumpex and SNB on April 7th, went straight home, and basically have been in good physical shape throughout the process. My fear of general anesthesia is somewhat allieved, now that I have been through it. It is amazing how my mind can build up the scary stuff in anything unknonw. Now, If only I could say the same about the tremendous fear I have of chemo, likely to be recommended to me again as I plan to go through at least two more consults before I decided what to do.

Pathology came back on Monday, and despite needing a re-excision (May 5th I think) due to a bit of unclear margins left. Don't wanna jump on the worry train about that one... i.e. did I choose the right surgeon? ) She knows my left breast by now so best I return to her!

THen the good news that I wanted to hear that day - the nodes were negative and the tumor was the same size 6mm or .6 cm, not sure the best way to write it. So still staged at 1. After hearing that the surgical re=do (under local) wasn't so hard to take) . I do hope she can get it all next time

The thing left hanging, that has been "hanging" for a while, is my actual HER2 status. Once again the IHC is equivocal and I await the FISH test I seem to be a borderliney HER2 in pathology with a mammaprint/ genomic testing that turned out NER2-. This is the point of discussion for my onoclogical consults and one of the reasons I don't wish to return to the original MO only as his approach was veryhanded.

Best luck to all in their future surgeries and ongoing recoveries during April

Elleanora

Heathet

hi everyone - 3 days out from surgery - BMX. Keeping the pain manageable with my meds. I'm feeling better day by day. ClarkBlue I also got the news cancer with in my lymph nodes. I've got appoints with an oncologist and radiologist in about 3 weeks. Chemo is definitely in my future. It sucks but it is doable. I was devasted when I woke up from surgery to that news . I've just being taking some time to process the news and adjust my thinking. Keep sending positive thoughts and prayers my way.

Heath

LatiekakeB

Just got a call with my final pathology, one of the 3 lymph nodes taken during the Sentinel node biopsy tested positive after all, despite them thinking they were all clear while I was under. i meet with the medical oncologist 5/2, I know chemo will be a definite, just not sure what all I should be asking at this point?

ClarkBlue

I am quickly losing faith in the medical community... I don't blame them. I have just come to realize that they REALLY don't know what they are doing when it comes to cancer... I have had SOOOOO many instances of, "Probably a 95% chance that it's just calcifications...(radiologist)" - OOPS, sorry it's cancer - but its' early!! "You're not going to need chemotherapy...(plastic surgeon)', "I'd bet money its not in your lymph nodes...(breast surgeon)"... "Lymph nodes are benign...(breast surgeon during surgery)" - OOPS, sorry it IS in your lymph nodes, now you'll need chemo.

I have a meeting with the cancer center next Wed. Drains out Monday. Meeting with breast surgeon Thursday.

Sorry gals... just hearing your bad news is making me angry. I love you all - and really am in good spirits. I just am doing a LOT of praying that the Holy Spirit will guide me as to what I need to do next so that I'm not subjecting my body to further poisoning. I will do chemo, but really need some advice as to what to prepare my body for so that I can keep my immune system intact.

Heathet - sent you a PM - didn't want to ask a private question on this forum - but feel free to answer here if you're cool with it.

LatieKakeB - UGH. I get it. Got the same situation going on over here. Everything was clear during surgery... I dread making those phone calls to my family and friends after celebrating such a victory.

brandford37

Hello Heathet so sorry you got bad news I keep you in my prayers I also had bad news too 4 lymph nodes were taken out and one came back positive but the good news clear margin it came back negative Chemo is a must for me and Radiation a little nervous but god got me true this treatment... Hey LatiekakeB we have similar diagnosis IDC, 3cm tumor, grade 2 and stage 2B one node tested positive. I meet with the oncologist may 3th so sorry one of your node came back positive we all in this together praying for each one of us who have to go true this Breast Cancer shit..... Hello ClarkBlue sorry about the bad news I did surgery April 12th Lumpectomy went to take out my drain tuesday April 19 the surgeon said it still draining so monday I'm going back to the surgeon to remove it it is so annoying can't wait to get it out

nightowlhoot

Hello and Happy Friday,

I was sad to read that positive nodes were found with some. I am so sorry LatiekakeB, Branford 37, Heathet and ClarkBlue (Keely). Just so crappy to have to extend the time and energy spent fighting this stinkin' BC. I do want you to know I am praying for you all whenever I open up the forum to check. I do want to encourage you with this, I met a friend today (fellow mom at our school, only 35 at diagnosis) who had bilateral mastectomy with TE back in October. She had a lump on right, stage 1. She thought by doing the bilateral she would be done and never have to think about surveillance. She made that tough choice based on what she knew at the time. Then they found invasion and lymph involvement. The news was crippling b/c she made the bilateral decision thinking she’d finish off 2015 and start a brand new 2016 cancer free. Instead she had to do chemo and delay her full reconstruction. After chemo, she then got a recommendation to do radiation. It was another blow, but yesterday she was finally done with radiation. She was in good spirits and totally positive today. It is not over for her, she still has to finish reconstruction.

You will all be where she is in the near future. ClarkBlue and others, I understand losing faith in the medical community. We want it to be a science and definitive and it’s medicine after all, but I have learned even in medicine the doctors vary and it is annoying! Just because they have an MD and trained for years, I would still question and see what the current standard is based on the latest research, but some things are simply the doc’s opinion based on their own practice/anecdotal data. Personally I have heard so many opinions and varying practices and it’s FRUSTRATING!!! For instance, discharge nurse and handout says drains out at 30 cc or less. Then at post op visit, the NP at surgeon’s clinic says no, 20cc for two consecutive days. One nurse says change drain dressing daily, another said, if nothing coming through on gauze, leave it. Some say you should start ROM exercises day after surgery, some say after drains are out. Golly! I’ve gone online and read varying things from different well established academic hospitals.

And everything is about statistics and probability, but they should never say, to you definitely you will have lymph involvement or not until they have evidence. I wish the medical staff would just get that training as a way of learning how to manage our expectations.

Anyway, I encourage you all to inform yourselves through research, books, and advocacy groups. There is a great group here called Breast Cancer Connections and offers lots of support services including sessions with volunteer docs to go over path reports and treatment as well as classes and a library. I hope you all have such a resource near you like this one: http://bcconnections.org

If you can, go for second opinions at an academic hospital because those doctors keep up with the latest studies/research/protocols because they are training future doctors. The community doctors may keep up and do CE, but they will do what their institutions encourage and what they feel comfortable doing. Trust your gut.

Wow Lizzy1981, you’re an inspiration! I need to get back to walking the dog/hiking so I can lose the extra 5 lbs I’ve put on during this ordeal. I have been mostly wearing sweats and when I put on a real pair of pants I couldn’t button them. Geesh.

I went through my entire bra collection to see which ones I could possibly still use (some are so old they needed to be tossed anyway). . . it was a little depressing. . . right now I can only wear camisoles. Even sports bras feel odd under my pit. Like a chaffing feeling. I need to get some shelf bras while I wait for my prosthetic prescription, they won’t give it until 6 weeks out. Bummer. But I am small, a B cup so it is easy to conceal my uniboob.

My husband and girl are back from their trip to Gold Country, she was happy to see me without drains and be able to give her a real hug. I am still numb and slightly swollen under my arm, but overall feel much better without the drains. I did finally get a PT appt, but not until the week after next.

We got the direct line to the pathologist who signed off on my report and will speak with her about the report.

Anyway, I hope all of you keep recovering well and get drains out soon. If not, just remember they are doing a job.

Lots of warm thoughts and hugs to you all.

Night Owl

Heathet

thank you everyone for your support and sharing!

Jr114

I also was very upset to hear that some received bad news this week. Please just remember that sometimes we just have to take things one day at a time. It has been 3 months since my mastectomy and looking back I am not sure where the time went. I just went back to work this week and it actually felt good to be having a "normal" week.

I keep you all in my thoughts and prayers.

ramprat

Hello Ladies

I have my exchange surgery scheduled for April 27. CAn I join this group?

Thanks

ramprat

Jacklin

Hi ramprat,

Of course you can join, I've added you to the list in the post itself.

My dear sisters, I am so sorry to read the news that some of your received last week. Not nice at all. Know that we can and will fight, hard. We are here to support each other and we will continue to examine all options. Know my thoughts and prayers are with you all. Breathe, take things one step at a time and remain strong.

My surgery is tomorrow morning so I will be away for a bit. If anyone new joins, please send me a pm and I will add you once I log on again.

Hugs for you all,

Jacklin

Paulinek

My left expander is starting to poke out right around my nipple and on my right side the skin between my midline and nipple changes from thicker skin to very thin so there is ridge. I am getting nervous about what this will mean down the road with implants. Is anyone else with expanders seeing something similar?

nightowlhoot

Good luck tomorrow Jacklin and to all the ladies having surgery this week.

Welcome Ramprat!

Sorry you are in discomfort PaulineK. I didn’t have recon and am still uncomfy at about 3 weeks out. It’s not pain per se. It’s tightness, slight swelling, numbness, and sensitivity all at once on my affected side. I feel like there is a huge swollen bug bite under my armpit area. I have a f/u appt next week with the BS and an appt with the PS to see about fat transfers so I don’t feel my bones and to smooth out my skin a bit.

I did put on a bra today and used the soft foob that came with my mastectomy camisole so that I could wear a dress to an event. I’m pretty much flat at a B so you could hardly tell!

Tomorrow we meet with the pathologist to review my slides. I requested this b/c there was a line in my final path report about areas which it was hard to rule out invasion.

Anyway hope you are all encouraged.

Night Owl

LatiekakeB

Went for my first post op visit today with ps and got two of my 4 drains removed. Was a pretty quick visit, but they said I can just give them a call later this week and come back in if these last 2 remain under 30 ml output for 2 days, fingers crossed for them to be out by the end of the week!

Pain has also gotten better, I'm now a little over a week out and have only had to take 1 pain pill along with some aleve.

I've been in a better mood as well, kind of out of the funk I was in after finding out about the node involvement onFriday as well. Found out a family friend is a PA at a oncologists office so I was able to talk to her about a lot of things today in advance of the appointment I have on Monday with the oncologist at Mayo Clinic, so it has calmed me down some.

Hope you ladies are having better days today as well!

brandford37

Hello guys hope everyone doing ok #breastcancersuck.... drain out from Monday, have an appointment with the oncologist on tuesday an someone tell me what to expect and the type of questions to ask..

crazemaze

Hi all, just had my lumpectomy yesterday. Doctor said I had clear margins but I had 4 nodes removed through sentinel node biopsy was surprised how many nodes she had to take. Anxious to get my pathology report. I feel surprisingly good though! Curious if anyone else had 4 nodes removed and outcome?

Hopeful07

Jacklin, thank you for adding me to this lost and hope your surgery went well.

I had a bilateral mastectomy on the 18th with direct to implant. Pain has been manageable and doing better every day. Unfortunately my right nipple turned all black which I noticed on the 3rd or 4th day and thought I had nipple necrosis. Talked to the ps and sent photos and he told me they looked ok and to take the post surgical bra off. So I have been braless this whole time. Saw him yesterday for the post op appt and he took two drains out. Told me to keep putting the aquaphor on the nipples and stay bra free.

Has anyone had anything similar? I am thinking this was because we did direct to implant. Or is this just bruising? My breasts have many dents and ripples - nobody warmed me of this so I am wondering how they will heal and look. I guess I am supposed to take my time and be patient.

Have a post op appt with my breast surgeon and will find out re: pathology report.

I'm very sorry to hear about those who had positive lymph nodes. Stay strong, and thank you all for being here.

NattyB

Hi Hopeful - I will be following you with direct to implant on 5/16. So glad you posted. I wont be keeping my nipples though so cant offer up anything I've learned - sounds like they think it might just be bruising? Glad to hear the pain is manageable. Did you have 4 drains? Thanks so much for posting.

Hopeful07

Hi NattyB:

Yes, I had 4 drains to start with and they took 2 out yesterday and will take the rest out next Wed.

I guess it's just bruising from trauma but I had no idea they will turn black but the surgeon didn't seem too worried so I am just going to have faith that they will flake off and turn normal color.

I will keep you posted on how they heal. I hope I won't need another surgery but they don't look the same to me right now. Oh one more thing I wanted to add was that my surgeon put the implants prepectoral.

NattyB

Thanks for the reply Hopeful. I'm sure it takes a while for them to settle out and your skin to recover from the trauma of surgery. I had implants previously so my pocket is under the muscle which is where they intend to put the new ones, but not nipple sparing Don't know yet if I feel the need to do anything reconstruction wise with the nipple - Im just ready to get them out and start chemo so I can be done with this crazy odessey.

Paulinek

Branford37 I had a lumpectomy in November, then found out I had to chemo, and because of bad margins I just had a BMX following chemo. Happily my pathology from the mastectomy showed no evidence of disease, so as scary as the thought of chemo was, it did its job. I will tell you that it was not as bad as I had expected it to be. I had some pretty bad days, but overall I was not as sick as I thought I would be. I would ask your oncologist about what regimen of chemo they are reccomending, then check out some of the chemo boards here to get support. My oncologist went over things like risk of recurrence with and without chemo, chemo side effects, and hormone therapy (no rads for me). I would bring something to write down what is said because it can be overwhelming and you might forget.

LatiekakeB

Hopeful: I did nipple sparring, and they told me to be prepared for the nipples to change all kinds of colors as you heal, with possible discharge.

Mine have changed to a darker red in some spots, pretty dark purple in others, with a little bit of discharge. The plastic surgeon did not seem concerned when I went in for my first pre op yesterday.

I had sub pectoral implants previously which they removed, and although I thought I'd be a candidate for direct to implant they ended up putting expanders in behind the muscle anyways, saying in the long run I will have a better result. I was thinking it wouldn't matter since I had essentially already been expanded, but they mentioned some women get more rippling and so forth going straight to implant, depending on the skin envelope.

Mine are still very weird looking with dimples, look shriveled up, and places where they scraped stuff out up high (as my tumor was high, and reading the path report it sounds like the bs had to go back in for clearer margins). I hope things eventually smooth out as well. I know some women end up doing fat grafting as well down the road to kind of smooth them out.

To the person asking about how many nodes for SNB, I had 3 removed.

Jr114

Hopeful-- I did nipple sparring bmx and my nipple on one side did turn blackish but eventuallyit peeled and then it was fine. I just had exchange surgery 3 weeks ago and I do have some rippling which they may try to correct with fg down the road.

I had 2 nodes removed but going in for surgery I didn't know how many were going to come out.

Birdysmom

Hi Jacklin, hi all. Am glad to meet you- not thrilled WHY we're all here, but haven't met a better bunch anywhere. I had a uni mastectomy and underarm node dissection this past Monday, 25th. No recon. It was not what I expected... they do outpatient surgery and send a home nurse to check on things a few days after (saves $$$ I guess). There's one drain, but it grosses me out so much I can't empty it without help from family. Then I made mistake of peeking under the ultra-tight bandage wrap and the wounds are closed with metal staples. Uhg! Anybody else get staples? Is that normal? Pain is less than thought it would be, especially if I don't disturb the wound areas. Wow, this is some crazy shit. My friggin' boob is like gone and I can't get over that messed up crap yet. Then had to see a giant row of those freaky ass metal things in my skin and a bloody piss colored fluid collecting in a rubber turkey baster looking thing...oh f*ck me...8-O

Can't believe people have to go through this!

Sorry for the cussing, I get crude when upset:-(

nightowlhoot

CrazeMaze, I thought I’d have 2 nodes from our pre-op BS visit, but after the surgery I found out 4 were taken.

Hopeful07, hope your path report yields good news.

PaulineK, so glad chemo did its job for you. When I met with the pathologist to go over my slides, she shared she had BC 8 years ago, found while breastfeeding her last child who was 8 months old. She said it was Stage 3 and came out of nowhere. But chemo worked for her too. I feel like every time I turn around there’s another BC survivor. While that’s great that survival is so high, it does stink big time that there are so many of us!

Welcome Birdysmom! I laughed at your post even though this whole cancer thing isn’t funny, we do need to keep our sense of humor. So I gave up cussing back in college when I officially became a Christian, but I grew up in NY, Queens and I had a potty mouth just by default. It was part of the vernacular. I wouldn’t even be pissed, but we’d say stuff like I have to go wait for the f’ing bus, Can you believe that sh-t happened? What are we going to f’ing eat for lunch? etc. And when I got my diagnosis the NY in came back and I was like F this and F that in the car without my kids of course. My husband was shocked b/c he has never heard me cuss since I met him at church in college after I swore off swearing. Ha ha.

Anyway, everyone goes through different phases and I had my pissed off and angry cabinet slamming, laundry on the floor kicking (son’s room) stage. Cuss away sister if it makes you feel better. It is no time to feel the stress of having to censor yourself. Well maybe just in front of kids. . . ; )

I did take Arnica and put Arnica gel around my incision and then my drain sites when they came out. It’s in the homeopath section at Whole Foods or Sprouts and even Trader Joes has arnica gel. I don’t have any bad bruising on the skin, but do have swelling/tenderness.

No staples, dissolvable stitches with steristrips over them. BS said to keep on and let them peel off naturally and the longer they stay on the better for healing b/c of the tension. So I had surgery 4/5 and they are still on. I shower but do not allow water to fall on them directly.

My meeting with the pathologist went well. I got to see my breast tiss slides and even to my untrained eye my ducts looked messed up. The line about the desmoplasia making it difficult to exclude invasion meant they had to look extra hard for the cancer to see if there was breaking out of the epithelial something. She said immune response was seen which meant my body was fighting it. I saw what she meant about how in some slides it was easy to see that the abnormal stuff was inside the ducts, but in some slides the proliferation was so extensive that it was challenging to look for invasion, but she said she looked and her fellows looked and they saw none. So I feel better and even better given she herself is a BC survivor. She gave me pictures of the sliced up breast under x-ray she had printed up where they highlighted the sections where DCIS was found. It was in a lot of my boob. It was worth it to meet with the pathologist. I asked her how long she thought the DCIS had been there. She said it is speculative and different for everyone. She did say generally in younger folks it is aggressive and there for a shorter time. When it is found in older women it tends to be slow growing according to her experience.

I am going camping at Yosemite. I have lived in CA for years and never been. It is on my bucket list. Nothing like a cancer scare to get me moving on that list. But it’s supposed to be cold this weekend. I won’t do a strenuous hike b/c I have younger kids too, but I can’t wait to see it.

I hope you all get to do something fun this weekend!

Night Owl

Eleanora23

Thank you! The links posted in initial post are really helpful! My surgeon barely had time to tell me anything. So good to have some solid reading material, that is one things I like about this site.

My LUMPX of 4/7 resulted in not getting clear margins. In this case, rather than overthink it, Im just trying to go with the flow and not think much about the re=excision next week -May 5th. My first thoughts, since I feel like I have no idea what I am doing, is that I chose the wrong surgeon etc, otherwise I'd be "clear" but I realized there is not point in going down that road. She is one of those surgeons that one cannot barely get 10 minutes from and I do rely VERY MUCH on the hospital nursing staff at the breast care center to fill me in on what to expect. I will have to trust that she knows my left breast LOL Praying that she gets it all next time .

Best wishes to all,

Kathy

Jr114

Hi Hydranne... I am actually originally from January surgery post and I am also in April for my exchange surgery. Both are a great bunch a ladies. Sorry you find yourself here and I will be sending healing thoughts your way.

Eleanora I don't think having to go in for re-excision is that uncommon. I think there is another thread on lumpectomy that you can read up on ... Sorry I couldn't find it to link you too. Last year I had two excisional biopsies to get clean margins for ADH. The second surgery was a little easier for me...I think bc I knew what to expect.

Hope all that had surgery this month are doing well... You all have been in my thoughts

Jeannie

raven4mi

Hello, all. I'm new to this site/board. I had bilateral (left side prophylactic) nipple-sparing mastectomy with tissue-expander replacement on 4/15. At my second post-op appointment with PS this week he informed me that the blood flow is compromised to the nipples on both sides and he's scheduled an excision for 5/11. The PS was originally concerned only about the nipple on the right side which is the breast that I had lumpectomy/radiation in 8 years ago, but now he says that both sides are compromised. After reading through some of the posts, though, I'm not convinced it may be necessary? The skin around the nipples is very dark right now but it has started sloughing off and the skin underneath is bright pink and sometimes bleeds a little. I am applying prescribed anti-bacterial ointment 3x/day to stave of infection and am also taking an antibiotic prior to the excision. I also have a tingling sensation in both nipples that started 2-3 days ago. I was kind of resigned to having them removed - disappointed, of course, but I'm kind of in the "I've lost so much already, wth" frame of mind. Just wondering if there's any reason to hope this might not happen. I'm also wearing the bra they provided post-surgery 24/7 which is, as you know, very tight - I'm wondering if removing it periodically might increase the blood flow to the nipples.

I'm sorry to those of you who received bad news regarding lymph nodes. They did the mapping and biopsy on the right side during my procedure but everything came back clear.

Eleanora23, when I had my lumpectomy 8 years ago I had the same experience - they didn't get clear margins the first time and I had to go back in for a second procedure. In my case, though, I think the BS was trying to be as conservative as he could so as not to impact the "look" of the breast too badly and he just miscalculated. After the second procedure everything came back all clear. (And the breast still looked great post-op btw - my BS was an artist, imho!)

Sorry to have to "meet" you all on these boards - I'm sure none of us really wants to be here, but looking forward to getting to know everyone.

raven

Jr114

Hi Raven4mi

Sorry to hear you are having problems. I had bmx nipple sparring. My nipples actually completely scabbed over and it took 3 to 4 weeks to heal. I had some skin necrosis from the die that they injected for the nodes but It did heal with a small surgical procedure to remove the area. There is still some skin scarring but I hope it will eventually fade. Hopefully that is what is going on with you.

raven4mi

Just wanted to give a shout out to the other MI ladies on this board. Hi to Heathet, Mrs.GreenJeans, and ClarkBlue!

ClarkBlue and Heathet – so sorry about your lymph node diagnoses.Stay strong – I'll be praying for you.

ClarkBlue – I can totally relate with your frustration with the medical community. Every time I have to go anyplace for any kind of medical treatment I'm constantly making process improvement flowcharts in my head! There seems to be an awful lot of "the left hand doesn't know what the right hand is doing." If only I could figure out a way to make money as a consultant to the healthcare industry! Ha!

MrsGreenJeans, wondering how you're doing now subsequent to your exchange? I hate to wish my life away but, honestly, I can't wait to be at that point in the process.I just asked my PS at my last visit about when I was going to be looking less like "Bride of Frankenstein" and more like "Bride of Dale" (my DH's name) and that made him laugh. (Answer: "It's a process.")

To anyone who may be reading the board in anticipation of an upcoming procedure, just wanted to share my post-op experience.

My surgery was on Friday, 4/15. I spent one night in the hospital and was discharged the next day. Honestly, the only pain/discomfort I've had is from the drains and the limited range of motion with my arms – kind of hard to do stuff with T-rex arms! LOL! I was on narcotics as needed for 3-4 days after surgery and then went to Extra Strength Tylenol and at two weeks post-op I don't even need those anymore. I still have the drains – my PS is being VERY conservative on removing them. My output is currently around 20 cc in 24 hours and he still won't take them out. A bit annoying but I'm doing my best to be a model patient – I'm assuming the risk is not worth taking them out too early. Range of motion in the arms is drastically better and gets easier every day.

I also had SNB and I've read on other forums where people were so anxious about the dye injection. When my surgery prep nurse called to tell me about it she kept hinting around without coming right out and saying it that it would be excruciatingly painful. Let me tell you, that was NOT my experience! They put a lidocaine patch and ice over my nipple for about an hour prior to the injection and I felt only slight burning after the 4^th of 4 injections. PLEASE, try not to get too worked up over it – even if you have a slightly worse experience than I did remember that it's only a little burning for 3 seconds or so after each injection (4 total.) We're warriors – we can take anything for 12 seconds, right??

I deliberately chose not to find a forum like this prior to my procedure but now that it's behind me I'm glad to have found this one. It's nice to read everyone's posts and I thank you all for sharing your experiences. Looking forward to giving/getting support from others who know what I'm going through!

raven

Moderators

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