January 2017 Surgery Group
Comments
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docmama, I am so sorry to hear about your sister. I find it weird that MO would not suggest genetic counseling. I'm not sure of your age but I am 43 and based on that alone they suggested it. You look to be pretty young as well. I have zero family history. I did not test positive for any of the genes but because I now have breast cancer, they say my mom and sister both are at increased risk anyhow. Stupid f'ing cancer! Sounds like a lot going on in your home but thankfully it sounds like all with the bug are on the mend.
Jnmo, sounds like you are getting pretty well set. I bet it feels good to be getting all that accomplished!
Congrats on the nipples maya15!! I like that we get to celebrate things that most people don't get to. Nipples, drain removals, poop... the list goes on!
Pugsmama, do you like your sleep number bed? My sister loves hers and my in-laws love theirs but I've also known a few to hate them. Hubby and I would like to get a new bed in near future so just curious?
LeftCoastie, I hope you get your remaining results soon and that reconstruction is looking good. There is another random thing to celebrate... showers! Hoping you get yours soon!
GT1965, welcome and yes, this place I think is safe to say, has helped each one of us tremendously. No matter how great your support system is, just being able to connect with those who totally get everything is so huge. I was a little shocked at just how quickly I began to care about each and every lady. Everyday and usually multiple times a day I find myself checking to see how everyone is coming along and to post my own success (like pooping!) or my fears with everyone.
Lastly (for now
) thank you all for the encouragement as I await results. Geez, they BETTER come today!!!! Unfortunately, my husband had kept his schedule pretty light Monday and Tuesday since that's when we were supposed to get the call and now he is pretty busy the rest of the week so won't be here with me. Today is also the only day of the week my sister is not able to be with me. Once I get the call, I'll be back hopefully to celebrate clear margins and clean nodes! Much love to all!
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Hey girls - thanks for the community, I have been mostly a stalker until now, but finally feel like I should post and say an official 'hello'. I was diagnosed on 10/31, went thru testing and appts until first lumpectomy on 12/6, didn't clear margins and had 1/3 positive nodes so another lump and port implant on 12/20 then started chemo on 1/6. I had a hard weekend - and finally felt good yesterday and overdid it, had a 99.7 fever by 4 and had to take a nap (I don't think I have napped during the day since college). I am feeling good today but will pace myself today.
Fightinggirl - I have been been thinking about you, the waiting is a hard part - for me, I just expect the worst and if it comes when your hubby isn't there (mine wasn't) after your done, just call him, its fine to cry or scream over the phone, that is what they are there for. So many good thoughts to you for good results but know that no matter what you find out, you have got this!!!
docmama - so sorry to read about you sister, I agree with everything fightingirl said, I just turned 50 in Dec and did the genetic testing as well (it came back clear) but know that daughter and sister and even mom are at increased risk. you and your sister can share this journey together use that to both of you advantages!
thanks again for all the words of encouragement and humor, I have needed this.... sometimes I have felt alone in this journey, and I know it is really just beginning for me.
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bccpa, so glad you reached out! Glad you are feeling better today but YES you take it easy today!!! All these girls will second that! You are not alone. We will be with you EVERY step of the way. I am not sure yet if chemo is in my future but I may be looking to you for advice down the line. Wishing you a nice and very restful day and really, really glad you decided to join us
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bccp - I can completely relate! I stalked for awhile also and finally got brave enough to finally post. I'm so looking forward to the support I know I am going to need thru this journey. My lumpectomy is 1/17 and all I can think about is clear margins/nodes. All of these ladies are wonderful so continue to post - your questions just may help someone else
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Hi ladies! First post, although I've been reading the obnoxiously long "Lumpectomy Lounge" thread for over a week. Learned so much from the casual BC chatter there!
I thought that my lumpectomy would be scheduled sometime next week, but they called me late yesterday and said that wouldn't work, could I come in this Thursday (aka, tomorrow...) I said yes, so now I get one day to prepare.
Background: I'm 46. Found the lump December 15th, two days before I was driving out of state for a two week holiday with my family. The local mammogram folks couldn't fit me in on my schedule, so I went ahead and did the diagnostic mammo and ultrasound at my destination. Unfortunately, we all know how this story goes since I am here ... they wanted a biopsy and could do it the next day. I called back home and they couldn't see me until January 17th (easy answer there). So, biopsy out of state - got the call on our drive back home. Small tumor, DCIS with some IDC - no evidence of lymph node involvement. HER2-, ER+, PR+.
Nice to meet you all, although I do wish none of us had cause to meet in this manner. Let's kick this cancer junk in the butt!
Haven't met my RO yet, I am hoping that the 5 day SAVI protocol remains possible for me (my surgeon showed me the SAVI device, WAY bigger than I imagined but I think I can handle it...). I know Tamoxifen is on the future agenda per discussion with my MO and the really high results for my ER and PR (98% on both, sheesh). Hoping I can somehow find the smooth path through this jungle, I am a martial arts instructor and competitor and need to be able to stay active!
(editing hoping the signature thing will show up now that I made it public)
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Welcome Pyrrh - Glad you reached out, good luck tomorrow, you will feel so much better getting along in this journey, finding out more about the tumor is good too, knowledge is key! Take your time recovering after tomorrow, allow others to help you and take care of you, your body needs your energy to heal, stay up on your meds and don't wait for the pain to really kick in, you can do this! I have to say that my surgeon had gotten me excited about the 5 day SAVI and when my lymph node was involved I felt crushed, almost wish drs wouldn't get hopes up when dealing with this stuff.
Anyway, good luck tomorrow, we will be here for you as soon as you are ready to come back!
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Hi Girls,
It is good to hear that for the most part, everyone is doing well. Waiting for pathology results is one of the most anxiety producing parts of this process. I believe it is as bad as the couple of days just prior to surgery. I am the kind of person that just wants to know....good or bad so that I can move on to plan B. I am expecting my results tomorrow. To those that have just joined us, I am sorry you are here but you will receive a ton of support from some really great and funny girls.
It amazes me how much post op protocols vary among physicians. My BS has me in a compression bra but does allow me to shower with the drains in. The drains are covered with an occlusive Tegaderm dressing and the incision has steri strips. There is a blister on my left side that is covered with Dermabond skin glue-for the life of me, I cannot remember how the doctor said that happened. I hope that my PS is ok with what my BS has had me doing. I will meet with them both tomorrow. I had skin and nipple sparing BMX and it is not a pretty sight. I am hoping that weeks down the road that I will be happy with my choice. Both nipples are very dark purple... lefty is worse (had previous radiation) and I'm not sure she is going to survive this. The plan is to return to surgery on 1/20 and have direct to implant placement above the muscle if all of my tissue looks viable. I cannot imagine going back in to surgery so soon as my chest is still very taught and swollen not to mention sore.
Docmama- So sorry about the illness spreading through your family. I hope you continue to stay well. I cannot imagine heaving and vomiting with a chest this sore. I hate that your family is having to deal with all of the BC issues. The first time I was diagnosed, I was 36yo and one of the first things my MO did was send me to a genetics counselor and order BRCA testing. At that time, my only family history was a paternal aunt. We were considering having another child so I had gone in for a physical. Luckily my very thorough FNP sent me for a baseline mammo which found my early stage BC. I still get emotional when I think about what would have happened without her. I would have gotten pregnant and my BC probably would have gone undetected until it was far advanced. Since my BRCA was negative, I opted for Lump+rads and have not regretted that decision. However, 2 yrs after my first diagnosis, both my mom and sister were diagnosed (both early stage). I always knew that if I ever had a recurrence, that I would opt for more aggressive surgery. I was diagnosed this time 10 yrs and 6 days from the first time So, my family is considered to have a "familial" cancer. We are in a study at UNC-Chapel Hill that is developing testing for other BC genes. It may not affect my generation but hopefully by the time my son is having children, we will have knowledge that would potentially affect medical decision making for his family. The cancer genetics counselors are so freaking smart- I hope they can help sort things out for your family.
Wishing you all a good day! I will be hoping for good reports for everyone waiting for results and comfort to every one during your recovery. I will forever laugh when I think of the bungalow. My surgical team was probably so glad to put out that cuckoo lady that wouldn't shut up about that bungalow and fruity beverage.
When the anxiety creeps in-head for the bungalow!
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Ladies! I'm home! It's over and I'm doing well. It didn't all go as planned. The expanders didn't go in yet because I needed more blood flow or something. It's hard to explain but I will just have delayed reconstruction. Probably in 6 weeks unless I need radiation. Unfortunately, they did find some cancer in my lymph nodes. Only one and they took it out. It was a long day but I'm so glad to be done and home. I have 3 drain bulbs and a camisole to hold themThank you all for helping me through this! Praying for the girls going next.
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Hi Girls,
It is good to hear that for the most part, everyone is doing well. Waiting for pathology results is one of the most anxiety producing parts of this process. I believe it is as bad as the couple of days just prior to surgery. I am the kind of person that just wants to know....good or bad so that I can move on to plan B. I am expecting my results tomorrow. To those that have just joined us, I am sorry you are here but you will receive a ton of support from some really great and funny girls.
It amazes me how much post op protocols vary among physicians. My BS has me in a compression bra but does allow me to shower with the drains in. The drains are covered with an occlusive Tegaderm dressing and the incision has steri strips. There is a blister on my left side that is covered with Dermabond skin glue-for the life of me, I cannot remember how the doctor said that happened. I hope that my PS is ok with what my BS has had me doing. I will meet with them both tomorrow. I had skin and nipple sparing BMX and it is not a pretty sight. I am hoping that weeks down the road that I will be happy with my choice. Both nipples are very dark purple... lefty is worse (had previous radiation) and I'm not sure she is going to survive this. The plan is to return to surgery on 1/20 and have direct to implant placement above the muscle if all of my tissue looks viable. I cannot imagine going back in to surgery so soon as my chest is still very taught and swollen not to mention sore.
Docmama- So sorry about the illness spreading through your family. I hope you continue to stay well. I cannot imagine heaving and vomiting with a chest this sore. I hate that your family is having to deal with all of the BC issues. The first time I was diagnosed, I was 36yo and one of the first things my MO did was send me to a genetics counselor and order BRCA testing. At that time, my only family history was a paternal aunt. We were considering having another child so I had gone in for a physical. Luckily my very thorough FNP sent me for a baseline mammo which found my early stage BC. I still get emotional when I think about what would have happened without her. I would have gotten pregnant and my BC probably would have gone undetected until it was far advanced. Since my BRCA was negative, I opted for Lump+rads and have not regretted that decision. However, 2 yrs after my first diagnosis, both my mom and sister were diagnosed (both early stage). I always knew that if I ever had a recurrence, that I would opt for more aggressive surgery. I was diagnosed this time 10 yrs and 6 days from the first time So, my family is considered to have a "familial" cancer. We are in a study at UNC-Chapel Hill that is developing testing for other BC genes. It may not affect my generation but hopefully by the time my son is having children, we will have knowledge that would potentially affect medical decision making for his family. The cancer genetics counselors are so freaking smart- I hope they can help sort things out for your family.
Wishing you all a good day! I will be hoping for good reports for everyone waiting for results and comfort to every one during your recovery. I will forever laugh when I think of the bungalow. My surgical team was probably so glad to put out that cuckoo lady that wouldn't shut up about that bungalow and fruity beverage.
When the anxiety creeps in-head for the bungalow!
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Welcome Pyrrh,
Sounds like you got to this in time and will receiving treatment accordingly. I wonder from your post why , on your biopsy they could determine that you had a small tumor DCIS with some invasive cells as well . I had been diagnosed with DCIS very small through a stereotactic biopsy , but did not know until it was surgically removed with a lumpectomy that there was some invasiveness to it. That was indicated after the final pathlogy following lumpectomy.
I know every case is different, but I just don't understand this now. Can anyone shed light on that? ❤
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I am not sure Elam, I had an ultrasound guided core needle biopsy (different than a stereotactic one), and I just know that the biopsy result said DCIS on one line and IDC on another line. I guess I figured they got cells in both states - DCIS, and IDC - through the multiple samples they took.
"1. Invasive Carcinoma of no special type (ductal), 11 mm in the core biopsy"
"2. Focal Ductal Carcinoma In Situ, Intermediate grade (DCIS, Grade 2), Cribriform architecture without intraluminal necrosis"
(etc.... 7 total lines of stuff...)
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thank you Pyrrh,
I guess I should put this on my list to ask the surgeon when I go in for a followup on the 18th. He now is going to do a sentinel lymph node biopsy to be sure there isn't any invasion , but , I just wondered why they could not have done that during the lumpectomy and had to wait for the pathology which now indicated I did not have just DCIS as I was originally told. Others have told me on here that it sounded to them like one tumor 2 cell types . Because after my lumpectomy , I was told the cancer is gone and the margins are clear. So I am not sure ... I suppose checking the nodes now is prophylactic to be sure it did not leave the breast!❓❓❓❓❓❓confusing but , I still feel prognosis is favorable! Thanks again .
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congrats 3 bears!! So glad you made it through to the other side! Don't worry about the change of plans - better safe than sorry!!
Fightingirl, I can't stop thinking about you and hope your phone rings soonwith good news! Even though your husband is busy, we are here for you!!
Docmama, please don't get that bug from your family! Stay in isolation!!! Best wishes for a speedy recovery for all!
Elem, the lumpectomy biopsy is able to grab more tissue than the core, so it can more accurately detect invasion. It just takes a few naughty cells to change the game. Apparently from what I have read, 20% of dcis are found to be invasive upon further biopsy.
Welcome new girls!
Happy healing to the rest of us! Today feels like a watermelon margarita day - we deserve it!!
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elem, standard of care for dcis lumpectomy is not to check nodes unless it's a mastectomy. Standard for invasive is to always check nodes. So when they planned the surgery based on dcis, it's normal they wouldn't check your nodes. Now that they see an invasive component, they need to be sure it didn't start traveling to your nodes. It's not at all convenient or comforting, but that's the current standard of care as I understand it. I'm so sorry you have to go through another procedure
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thank you again Annoyingboob , my fears are calmed once again . I am so grateful to you all on here . Without you girls , I am not sure I would not be popping lorazapams everyday!
Fightingirl is in my prayers for that path report . The waiting is serioysly so stressful .
Good day to all you beautiful ladies .
💕💕
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Elle, I understand it exactly as annoyingboob. Best to just make sure you're all clear but am sorry for the second procedure. At least you get to the bungalow again!
I'm STILL waiting. I called my BS medical assistant 3 hours ago and she said she was going to call and find out the delay. It's now nearly 1 pm and nothing. My mind is starting to get fearful. Yesterday I was anxious and wanting to know but now I'm wondering what's wrong?? My surgeon is a top doc in her field and I'm certain she would not have said Monday or Tuesday if she wasn't confident. She's been doing this long enough that she knows when to expect. I just hate too that she or someone can't call and say something...even if it's to say they are working on getting it. I'm sorry guys, I am just losing it. Everyone's been texting and calling over the last few days asking if I have news and I want to scream!
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Fightingirl - hang in there, the waiting is a killer but you have to understand that crap happens, even at drs office and they lose track of time..... try to distract yourself with crappy tv or clean out a cupboard, closet or drawer.... txt everyone back that you will be in touch with them when YOU are ready!!!!
we are all thinking about you and wishing you patience and good results!
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Alli - You are a strong women. Remember if you're nipples don't make it, the PS can make you new ones or there's always tattoo. I have the same fears. This whole process is terrifying. No, I cannot even imagine being ready for another surgery on the 20th! I'm sorry you have to even think about that. These darn TE's are not fun either, they hurt too. What's peculiar with my nipples is the cancer was in my left breast. My left nipple looks pretty good and the right looks dark purple. Crazy F'ing cancer! We will get through this!
Thank you everyone for being here!
Xoxoxo
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Hi everyone, got my pathology report today. Good news & a couple of surprises. The good news is all my lymph nodes are clear (whoo hoo!). The surprises are that my tumor is almost 3 times larger than we thought (.8 cm vs. 2.2 cm) and some of the path scores indicate it is moderately aggressive (e.g. 20% Ki-67, lymphatic invasion). Under traditional criteria, if my tumor were 2 cm, I'd be Stage 1A & no chemo. But what to do since it's only 2mm larger, which technically makes me Stage 2A? Traditionally, those with Stage 2A get chemo. Gratefully, my BS is in no hurry to treat me as if I'm really Stage 2A just because of 2mm (she said I'm "just over the border") so she ordered a MammaPrint of the tumor. From what I understand about the MammaPrint, it's a genomic test which gives a better idea whether or not chemo will be of any benefit in early stage cancer patients. So my dream of "gee whiz Liz, we're sorry, you didn't have IDC, you had DCIS - enjoy your reconstruction & have a nice life!" is over!! LOL
As one of you said recently, "this sh*t's getting real!"
Going to the bungalow for a pina colada RIGHT NOW!!!
xoxo
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So I didn't get to wake up with " teenage boobs" as planned. It's upsetting to say the least. I don't want anybody to see me this way. They did give me camisoles with forms. I haven't put the forms in yet. Maybe I should try them. I feel like moving to the island of misfit toys. The only shirts loose enough to wear with these bulb are my husbands shirts. I look manly. This is not the way it was supposed to go. I don't want to go 1 day looking like this let alone 6 weeks or more
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fightingirl, I am so sorry this wait is driving you crazy, it would me too. I just hope that they have called by the time this message goes out. It seems like the excruiating nerve wracking pre surgery anxiety only worse! Hang in there , I am sure you are tired if hearing that as well . I know , I'd be ripping my hair out by now! But maybe you can meditate or listen to some calming mysic to help with nerves.
Pugsmama,
Glad you got your report and the news spunds mostly positive . Sounds like you got in there justvin time as well . I hope that your options are the easiest yet most efficient way to eradicate this beast we have within us. Go enjoy a few fruity drinks and telax for the next chapter . Love you all ⛱
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aaarrrggghh- I've been agonizing with you girls all day!
Fightingirl- maybe they are doing special stains or additional tests that take more time? If you don't hear by today, perhaps you could call pathology just to make sure they have it and are working on it?
Pugsmama- so pleased your nodes are clear. It's hard to believe how much your life can change based on 2mm, but it seems like you could really go either way - 1a or 2a - depending on your level of comfort. And here we thought the preopanxiety was the worst. Now it's these hard decisions where there really is no right or wrong. I wish you peace with whatever you decide.
3bears, I'm sorry for your disappointment. So much energy goes into preparing yourself for a certain outcome, so when they change the game midway through it's frustrating. But keep your focus on the final outcome which is your good health first and cute little foobs will follow eventually.
Alli and left coastie, I'm saying a prayer for your nipples and I hope alli gets good path results today.
Its been a tough week for everyone, so let's rally together and try to remind ourselves of the little things we are grateful for. Since the big things like health are a bit out of our control at the moment, we can be thankful that we are still here, we have this group and are lucid enough to talk to each other. Here in NorCal the torrential rains have stopped and we even have a little sun peeking through, with gushing waterfalls on the hill where I live.
Stay strong ladies. You got this!!
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3bears - I am so sorry things did not go as you had hoped. I know it is going to be hard to wait the six weeks before you can get the implants put in. But, take comfort knowing that this is the safest way to do it for you. You certainly would want to run the risk of infection or necrosis. But I can imagine it was quite a shock when you woke up with something different than what you expected. Hang in there and try to keep upbeat and focus on your recovery.
Pugsmama - dang it. I am kind of surprised that the tumor was so much bigger than they thought. I guess that shows that the mammo/MRI (did you have a pre-op MRI) aren't always perfect. I hope your mamma-mapping comes back and will preclude you from needing chemo, but I guess we all need to do what we can to make sure we are NEVER on this board again.
Fightingirl - I hope that by the time you read this you already have your results and are celebrating with your husband. Personally, I am asking my BS to call my husband with the results when we get them because I don't want to be home alone if it's bad news. Praying for full containment for you!!
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I didn't check in for a minute and now tons of happenings! To those with sickness floating around your household, let's just believe that you will be spared. Health to all 🍻
To the recoverering, bravo for getting this far! Your words of encouragement and information have been so helpful and we are happy for your progress, even tiny steps.
To those waiting, it sucks! I agree that knowledge is power whether the news is what we'd hoped for or not.
Had my PET scan this morning, got a detox smoothie and headed back to work, keeping a respectful distance to keep radiation at bay. Oncology visit tomorrow will be my turning point I think, to find out if anything has spread and to discuss treatment options. I truly hope that it is just in my breast or even nodes and can move forward to get these sick babies OFF and move on!
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Dang it! I knew I should've waited before pressing submit- started my comment at work and entered at home without reading all the in-betweens.....
So to the slightly and/or greatly disappointed but strong and courageous women here, I send you so much respect,love and hugs❤
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Well, this board certainly moves quickly to say the least! PugsMama, it seems that you have a very good team so I wouldn't second guess what they are telling you. I am sorry that the Mamma print will only mean more waiting time for you but as Tom Petty says "the waiting is the hardest part". I'd have to disagree with him as he's obviously never gone through a lumpectomy, mastectomy or chemotherapy!
3bears, you are only one day post surgery. Avoid looking at yourself too much, your body is still healing and it will start to look better. My PS has repeated to me over and over - it will look bad at first but remember I CAN FIX IT!! Reconstruction happens over time, not over night.
Fitghtingirl, I hope you have results soon (see first paragraph).
My hubby opened a bottle of Merlot that we had been saving for a special occasion because my BS called this afternoon and told me that I have Pathologic Complete Response! Now on to finishing this reconstruction plus my last 9 months of Herceptin. There is a light at the end of this tunnel!
Angie
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boy oh boy, we are soooo lucky to have each other. I've just read some of your struggles and it is heartbreaking BUT annoyingboob is right. We have to stay strong. We can all still find things to be thankful. I like how you told us about the rains stopping annoyingboob because that is exactly what it feels like for some of us it is still raining but the storm can't last forever. The sun will shine again. I'm sorry some are still stuck in the storm with me but let's get out the umbrellas and do our best to wait for the sun.
I finally called BS office a few minutes ago as their office was getting ready to close. It turns out my pathology report was sent to my primary doctor and nobody knows why
Scratch that paragraph above....finally got the call! Clean margins and no lymph nodes!!!!!!!
Gonna celebrate with the hubs but I'll be back later. Much lov
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Oh I am so happy for you . Congratulations on this fantastic path report that you painfully waited so long to receive . That news is so awesome . Go relax and celebrate . ❤💕💗
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docmama and fightingirl - woooohoooo!!!! great news for both of you! I can only think that all the good energy you have sent the rest of us has come back around to bless you - gotta love good karma!! well done, girls! put away those umbrellas and bask in your sunshine!!
for those still draining and recovering, take your time. day by day. we are cheering you on!
and for those getting ready for surgery, you can do this! love and light! xx
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docmama and fightingirl - I am crying tears of joy for both of you!! Amazing how attached you can get to people you don't even know.
I like that comment about reconstruction happening over time and not overnight. I am definitely not a waiter so that is such a thing I need to hear. Honestly I don't know if I even want to look after surgery. I may make my husband check everything.
All this stuff is so fluid; you just never know until you get your path report. I hate that. I just want to know NOW. And then even then you don't really know what the plan is till you meet with who you need to meet with.
It's like that line in Dr. Seuss' Oh the Places You will Go; "the waiting place". Lots of us are in various stages of the waiting place and if I have to be in it, I'm so thankful to have a group of ladies who get it and are waiting right along with me.
Question for you all: my friends asked me this morning if I'm going to take some pictures of my boobs before they are different. Did any of you do that? Honestly I have talked to so many docs at this point I don't even know what they're going to look like and what kind of incisions i will have. Guess it will be like Christmas after my surgery when I "open" it up except it's a gift I don't want and can't return
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