Nipple Sparing Mastectomy with immediate reconstruction
Comments
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Binney, Welcome and thank you for the helpful information!
Hurleygirly, I think you are in the clear girl. Mine turned black within the first few days. We will have to see what some of the other ladies experienced, but I think they would have turned black by now if that was going to happen. I'm glad you are able to sleep comfortably.
Prayers for GAgirl
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vmudrow (valerie) I had NSM for atypical hyperplasia too: glad to hear your final path report was good!
thelma: congrats to you too!!!!
Kathy
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Binney4-
Wow! Thanks for all those great links! I've bookmarked each one. I had my BMX, and sentinel node biopsy, done in March and this is something my surgeon never discussed with me. I am definitely going to take the time to educate myself so thanks for making it easier to do so.
I can't believe, knowing what I know now, that while I was in the hospital for MX I had blood pressure taken and blood drawn on my arm. I'll know better next time.
I swear we learn more from each other than all our surgeons combined!
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TNLady PHEW! I was hoping I would be in the clear. Now I just need that path report to be in the clear! Fingers crossed!
So, about the blood pressure check...I had a note above my bed informing the nurses to take a leg reading, even though one side did not have any nodes taken. I had to keep reminding the nurses, because they would come in and grab my arm and I kept pointing to the note above my bed. One nurse I had to remind 3 times! I know in the future, I can have it taken in the arm that did not have any nodes removed. The leg reading can be a bit off.
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Binney, thanks for finishing my sentence for me. I must have gotten distracted and was asking how long after initial surgery can lymphedemia occur and its sounds like we have to be forever diligent in reminding health care workers what side to take BPs/blood draws on. My mother had it really bad following her radical in the 70's.
hurleygirl: glad you are doing so well.
Thelma and vmudrow congratulations on the path report.
Gulp: May 20 is the big day?
Gagirl , good news this is over for you and you are recovering in the good care of your co-workers.
Fairport:are you all healed up now?
I'm going to have to keep a log on everyone, its so unfortunate there are so many of us.
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I got my final pathology reports from surgery April 27th and although my nodes were negative, my final dx was IDC with ER+/PR+ and now found out yesterday that I am HER2+++ .... I thought I had dodged the chemo bullet, but now find out that I might need to receive Herceptin??? maybe chemo??? more reading, more confusion about my treatment options...so, I am seeing a Medical Oncologist this coming Thursday and will find out the new course of action then. I'm not even sure what to ask???
The good news is that I am healing really well, 2 weeks out of surgery. The 'tightness' in my chest is much better and the swelling has gone down a lot. I tried to be 'tough' the first week, and really overdid it physically. So, these days, I am being more compliant, taking my pain meds, sleeping when I feel like sleeping, going 'out' running errands if I feel up to it. I'm just trying to listen to my body right now.
These boards have been so helpful. Some days I feel really good, other days I still cry for no reason.
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janny99- Sorry to hear about your path report. It just doesn't seem fair. I'm glad you are healing so well and have been so active. It shows that you are a really strong person which will get you through whatever is left to come. As far as what to ask the oncologist I'm sure there are some other forums on here that could help you with that.
I can definitely relate to the fine one day, crying the next. I think we have all been there. Good luck on Thursday. Keep us posted.
Kate
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yes, PB22, my surgery is this Thursday. May 20th. Thanks for remembering. I am starting to regret that I'm not going any bigger. I am thin and always have had a bony chest and my PS thought it would look less real if I went bigger. I want to get the surgery over with, and if I decide to get more fills, of course I will have to wait much longer. This whole time I figured I would stay the same size more or less but I am thinking I made a mistake...
Janny99, sorry to hear about your path report. Good luck with your new oncologist. And yes, I think a lot of us can relate to the differing moods. Once again, cancer sucks. How can you not cry at times? Or get angry? Or jealous of other people, or whatever? I've gone through a lot of emotions. And sometimes I still think, " I can't believe I have breast cancer."
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Hi ladies
Janny99: sorry about the path and the need to re-group, thinking of you.
Gagirl: You have been on a roller coaster for sure: sending good thoughts your way too.
Gulp:OMG I can so so relate to your worry. I felt exactly the same way, I really felt like I was going to be way too small but I was SO sick of the expanders there was no way I was going to wait any longer. I have read so many say the days leading up to the exchange are fearful ones....I think because it sounds so much more final.After my exchange when I first took a really good look at myself I cried, I thought oh no I DID make a mistake they are too small and so not symmetrical. I am sharing this because that was March 26, and today it is unbelieveable how MUCH they have changed, they look MUCH bigger and they are even. I learned that the pecs really have to let go and that drop and fluff thing, when it happens, is amazing. So dont worry wait and see: I bet you will be happy! I am petite and thin and if I went any bigger I think I would have been selfconscious...will be thinking of you
PB22: Im doing better, thanks for asking
The infection totally cleared up. I still keep getting this stupid lump which is full of old blood and I go to the PS weekly and he drains it, it seems like its getting less and less but the irony hasn't escaped me: first I was seeing him every week for FILLS, now I see him to have aspirations...Jeeze enough already! 0 -
Binney,
this whole topic of the blood pressure cuff is so upsetting to me. Not one Dr. mentioned any of this to me. After my bilateral they kept taking my blood pressure and blood very often at the hospital. I had a sentinel biopsy on both sides and one side they took out 4 nodes and 8 in the other. When i asked the Dr. why so many he said they take out whatever the blue dye lights up. I feel fine so far, 4 weeks out, but I feel sort of angered no one bothered to mention this risk and the blood pressure cuff. Is this truly a risk for all bilateral patients or does the risk go up with the number of nodes? I used to take my blood pressure all the time when I would stop in the drug store and get my blood drawn at least 2-3 times a year, now I feel at a loss what to do. Very upsetting.
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sweetie2040-
I'm feeling the exact same way! No one ever talked to me about any of this. hurleygirly had a note above her hospital bed (though she STILL had to remind people) and I'm wondering why that isn't standard operating procedure?
I need to get back with my BS. She did a sentinel node biopsy but I'm not even sure if it was both sides or just the one with cancer. The more I read about lymphedema the more it freaks me out!
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Kate 33- I had both breasts removed so it is standard to do sentinel node on both sides! What was weird is that I went to see the oncologist last week and the nurse was going to take my BP and I asked her if it was safe. She said oh, we can use the other arm, then I said, but I had both sides done, then she left to ask the DR. She came back and he said that's ok we won't take it. Then I went in to see him and asked him about it and he said not to worry about taking it because we have 100's of nodes. I thought that was contradictory. First he doesn't want me to take it and then he says it's ok to take it! I think this is one area (like so many other) where we have to advocate for ourselves and do what makes us feel safer. I'm with you, I started reading those websites on lymphedema and I don't like it either. To top it off my mother-law had BC like 40 years ago and she has a severe case of lymphedema on one arm where they removed all her nodes and it's horrible. Her arm is blown up and swollen and she is losing use of it. It's horrible to watch her suffer like that and at this point there is nothing they can do to help her. Her's is certainly an extreme case, but in our day and age we have make sure we are doing everything possible to avoid these situations minor or not. Let me know what your BS says about this.
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sweetie2040-
It's so funny. As you were posting this I was sending an e-mail to my BS and asking her about this.
Did you have cancer in both breasts? I only had it in my right so I asked her if they did the SNB on both sides or just the one with cancer.
I think you're right about advocating because I'm seeing a lot more women who were never told about this than those that were. I'll let you know what my BS says. She is usually pretty good about e-mailing me back fairly soon.
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Sweetie2040,
I had bmx and the SN on the cancer side was removed , not on the good side. I am also questioning his remark about his removing "everything that lights up blue" . The purpose of the blue die is to identify which is the first node that the breast drains to, and thats the one you take. If he waits long enough all will drain and light up blue. The blue is a tracer of the drainage pathways, not to detect cancer cells specifically. Isn't the lighting up of nodes during the MRI the indicator of what more to take? I know how irritating and frustrating all this is for you because it is for me just reading what you are telling us he said.
My mother had the elephant arm and her arm was useless as well. I remember the big cuff and machine she would use. I questioned the lymphedemia issue with my gs and his response was that by just taking the one SN , shouldn't be a problem as in a full harvest and my oncologist agreed but from what Binney says it sounds like there is still a chance. My guess is that if it occurs years from now, does one even report back to the GS to let him know, probably not. The oncologist would be the one who follows woman and should know.
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Sweetie, your mother-in-law's arm can still be treated, and should be to avoid infection and further loss of strength and range of motion. Because it's been untreated (or poorly treated) for so long it will not be possible to return it to normal size or strength (because of extensive fibrosis), but even in advanced stages of lymphedema manual lymph drainage can remove excess fluid and prevent progression. I'm so sorry that she's suffered so long with it, and I hope she'll be able to get good help to relieve pressure, pain, and infection risk.
I truly don't want to "freak" anyone out. Lymphedema is a risk we all face now, but knowledge sure trumps ignorance. Knowing you're at risk gives you the chance to choose precautions that will reduce your risk. And knowing the signs of early lymphedema will allow you to get early help.
PB asked about node removal and rates of risk. The Sentinel Node Biopsy was developed to reduce lymphedema risk, and it was anticipated that it would reduce it to around 1%. Now that some time has passed and studies have been started, it's clear that was overly optimistic. The rate of arm lymphedema is lower with SNB, but it's still considerable, at least 6% and probably actually higher than that.
What many people don't realize is that lymphedema is possible following ANY breast surgery, because the chest and armpit are rich in lymphatics (both nodes and lymph vessels), and damage to either can result in lymphedema. Women without cancer who have breast augmentation or reduction are at risk (and they are never told that), as is anyone, male or female, who has an auto accident where their chest impacts the steering wheel or dashboard. Football players are also at risk for lymphedema, from the chest trauma that's part of their sport. Who knew?!
There are other factors that affect our individual risk. The ones we know about include: previous surgeries or trauma to the chest; a history of diabetes or other vascular conditions; overweight (and especially weight gained post-surgery); post-surgery infection or seroma, or cording (Axillary Web Syndrome). There's recent research in the UK that points to the possibility that some of us may have a lymph system that is already working at full capacity, and the trauma of breast surgery simply overwhelms it, while other people have a greater reserve capacity to their lymph system. As of now, there's no way to know which of us is which!
But it does explain why some of us develop lymphedema despite some precautions, and others don't develop it no matter what they do. Until we know which of us is which, we're all at risk.As for the 100s of lymph nodes -- well, yes, we do have hundreds. Unlike other body parts, the actual number is not the same from one person to the next, nor is the distribution of them the same. The problem is that some few of them are critical to drainage in our arms, and some are critical to the drainage in our breasts. No one knows which are the critical ones (which is why we the need for the blue dye to determine which are draining the tumor area), so it's not possible to protect the most critical of them in terms of arm drainage. So a surgeon can take one that really matters, or twenty that have less of an impact. He has no idea which he is taking, and until we can understand that better we have no way of predicting who will be most affected.
The bottom line is: LYMPHEDEMA CAN BE TREATED! Recent research shows that the earlier treatment is started, the easier it is to control and the greater possibily of preventing both infection and progression. Many of our women who were treated even before there was visible swelling do not even need to wear garments unless they're traveling or exercising. The earliest signs of lymphedema are only detectable by YOU, and they include aching, tingling or heaviness, or just a "funny" feeling in your arm. If that ever describes you, don't be embarrassed to insist on an evaluation by a fully-trained lymphedema therapist. Signs of breast/chest lymphedema include visible swelling either generally or in specific spots, marks that remain in your skin for a long time when you take off your bra, and possibly (but not always) nerve pain that migrates around the area. You can also have lymphedema in your side or back, so those are also areas to be aware of.
The fear of lymphedema is one of the major reasons doctors give for not telling us about it. To me, that's a cheap shot. We're entitled to know about something that has the capacity to change our lives to this extent. But certainly living in fear is not what any of us need. Please do seek out the information you need to make decisions you can live with about risk reduction practices, and then move ahead with the confidence that you're doing all that's necessary to protect yourself. This post-bc life we've been given is meant to be lived FULLY!
Be well!
Binney0 -
Thanks again, Binney, for all of the information. This is definitely something I will be following up with. If it weren't for you there would be a LOT of women, including me, who would be oblivious to the risks.
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Binney: I've been gone for a few days and just starting to get caught up in reading....how great those links are! Thank you! I was actually going to order myself a medical alert bracelet from the American Cancer Society web site and they are expensive! Before I got there to order it I thought I'd read a little to get better caught up. What a blessing! Thank you, thank you, thank you!
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Kate, I love your new picture!
Binney, Thank you again for your wealth of information.
Gulp, I will be thinking about you this Thursday.
Janny, I love your new pic, what a cute baby! Sorry about the path news, but I'm glad you are healing well.
My life has been a little hectic lately, I have not been able to get on the thread as often, but you are all in my thoughts.
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Hi everyone. Thanks TNLady for thinking of me on Thursday. Fairport Lady, I'm glad you are happy with your look now. It is reassuring to hear your words. How long did it take for the drop and fluff, or whatever it's called? It's good to know you are in a good place. I remember you wrote about it afterwards when you weren't so happy with the results. I haven't gone on the exchange list, I think I get overwhelmed and I probably should have to know what to expect. Binney, thanks for all the info. I haven't yet read the links, but I will. I am glad I mentioned it here, I will read more when I get a chance. My newest situation is rough - my father has all of a sudden gotten very ill and is now in the hospital and I think he's dying. I am now wondering if I should cancel my surgery - I don't want to miss spending time with him. I've been spending all my time in the hospital with him. He's at the hospital where I work and I was planning on taking off Thursday, Friday and all of next week for the surgery and yesterday at work I said I can't continue working, so I am just hanging in his room. I don't really want to put off the surgery but I'm not sure what the recovery is, if I'll be able to visit him or what. Anyway I know this is kind of off the topic. Nothing about nipples in this post! Take care, everyone
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Gulp: Oh my gosh I am SO sorry for what you are going through! I am glad you are not trying to work on top of all of this. If you are suffering with the TEs and not sleeping well, having the exchange may allow you to feel stronger and physically better and more able to be with him. Im sure he would want you to feel better too.....just know this: if you proceed with the surgery there is nothing selfish about that!!! What you are saying is not off topic, its what is happening with you and we are here for you and thinking of you and behind you. Oh about the question: I think it is an ongoing process (drop and fluff) I just remember about 3 weeks post op I looked one day and thought hey: I look a bit better...and it just kept improving every day after that. HUGS to you ...
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gulp- I am so sorry to hear about your father. I recently lost my Dad to lung cancer and I know about hard it is to lose a parent. My Dad passed away sooner than expected while I was out of the country so I didn't really get a chance to say good bye. Can you talk to your PS and find out about the recovery and any limits on visits? I would try to spend as much time as possible with your father. You had said in a previous post that you wish you had gone bigger. Maybe you can postpone your surgery, do some more fills and spend lots of time with your Dad. I totally get not wanting to put off the surgery, though. It's like the finish line we're all trying to get to. It's hard to take a step back. Good luck with whatever you do and your father will be in my thoughts and prayers.
TNLady- Thanks for the compliment on the photo. It was my 13 year old son's doing. He said I needed a "real" photo!
fairportlady55- Sorry about all those aspirations you are having to do. What a pain!
Well, I'm off on my 2 hour drive tomorrow to see my PS. I haven't seen her in a month since my husband was doing my fills at home. I am so hoping she will give me a date for my exchange! (Though I kind of wonder if maybe I'm too small, too, and should go a little bigger.) Oh well, always second guessing ourselves. We'll see what she says.
Hope everyone is having a healing pain free day!
Kate
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Gulp: I am so sorry to hear about your father. When it rains it poors. Let us know what you decide.
Binney, thanks again for all the information.
Sweetie, thoughts are with you.
Kate33, Always second guessing as well.
Fairport, glad to hear you are well and moving along in the healing process.
Hello to BcColorado.
TN, end of school year, I bet your calender is busy for the next week or so.
Monday is my date to exchange the implants out for a larger size. Been very busy with the " todo list" before I"m stuck home again. I had my PS remove a lesion on my arm from an old mole that was biopsied a few years ago but just wasn't pretty to look at on my forearm. Reminded me of a pimple on the arm. Couldn't get the raised area to ever go down. Had it removed and sutures were in ten days and they came out Fri. Sat. it split open again so had to wait till Monday to resuture. After healing so nicely with the bmx, who would have thought a little mole would give me the trouble.
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Hey ladies...I feel like I dropped off of the face of the earth...or maybe I just want too? One is SO close to the other, it is way to hard to tell these days! LOL! I had my follow-up with my BS today; final path. reports not so good; ER-/PR-, HER2+++, Stage 1, T1BNO. I really have a love/hate relationship with that 8mm they had found hidden within my DCIS!! Looks like they are going to recommed TCH. I meet with my med. onc. tomorrow. Surgical recovery has been fantastic, despite the post-op treatment set backs. I have been feeling wonderful and my TE fills have been going smoothly, even plan on going back to work on Monday if I'm cleared by my PS (my BS said I'm good to go).
Janny99~I'm so sorry to read about your path. results and it sounds like your possibly walking a similar path. Please know I am keeping you in my prayers! I'm here to talk anytime...please PM if you ever feel the want or need :-)
Thank you for all of your continued prayers and I-hugs!
Still scootin'
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gulp I am so sorry to hear about your father. I know you are so torn about putting off your surgery to be there right now too. As a parent I know I would want me kids to take care of themselves first, but as a child, I would want to be with my parent! It doesn't seem fair! (I know, life isn't fair,...if it was none of us would be on this site to start off with!).
gagirl: I'm sorry about your results too. Hopefully your treatment will go well.
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GAgirl01 ~ Yep, sounds like we are on similar paths right now. I met with my breast surgeon Monday, and we discussed my path reports. I'm feeling pretty good & feel that I'm healing well so I also asked her about going back to work...looking at next Monday as well (at least part-time). I see my medical oncologist Thursday, and when my nurse navigator called me, it sounds like they are also looking at TCH. Let me know what you find out, this part is really kind of scaring me as it was not the course I was planning on. So more reading, more research, more questions, more learning...a little bit more 'fear' added to the equation. I am right in the gray area right now with 6mm invasive cancer within my DCIS. They don't always treat with Herceptin under 5 mm, so I'm right on the line. find out more Thursday, I guess
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Janny~With you being ER+/PR+, I'm new to all of this...but is Tamoxifen an option for you as opposed to TCH? I know it wasn't for me because I'm ER-/PR-; chemo w/Herceptin was it for me. Of course mine had to be 8mm! Have you read anything about the Penguin Cold Caps that are suppose to help stop hair loss? Very interesting read & testimonials; Encouraging. Anyone else who has had chemo. used them or know of anyone who has? I might be grasping at straws...but considering where I've been over the last month and a half...lost both breasts and about to face losing my hair...I feel like I can grasp at a few ;0)
I look forward to hearing more about your report on Thursday Janny...my prayers are with you. I truly know what your feeling...it's all scary and overwhelming...not at all what I had planned either!
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GAgirl01 ~ That's the same question that I had for my surgeon, about the Tamoxifen, as well as the RADs. She said that this is most likely still part of the tx plan. I keep hoping that they will just say, all looks good....just get on with your life!
As far as the Penguin Cold Caps, my very best friend had Thyroid Cancer in 1981 and she had used some type of Cold Cap treatment prior to Chemo (I think it was some kind of a trial or something back then) to keep from losing her hair. I think she only did this with her first course of chemo. The 2nd time she had to have chemo, she opted to just lose her hair. She was a runner, and she couldn't run in the winter or colder weather (Minnesota) without a stocking cap on after having had the "Cold Caps", I remember that when her head got 'cold, it would bring back the feelings of nausea from her chemo treatments. So, I believe that's why she opted to not use them the second time around and just opted to lose her hair. I'm kind of fuzzy on this, this was so many years ago when we were in college, and things have changed so much.
My best friend lost her battle with Thyroid Cancer in 1984, just prior to her 24th birthday, almost making it to her first wedding anniversary, and just 1 week after my first daughter was born...I still miss her! I might add that my middle daughter at age 18 was diagnosed with the 'same' type of thyroid cancer as my best friend.....she had 2 surgeries, a targeted radioactive iodine treatment, and she has been cancer free for 4 years now. So, times change, treatments improve, screening improves, and my guess is that the way the Penguin Cold Caps are used have probably improved as well.
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Jan & GAgirl: I'm sorry the two of you are having to go through this route. I know I saw a thread on here somewhere about the Cold Caps but hunted and can't find it. I know there are a lot of women on the boards who use them though with success.
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Gulp, we are here for you!
If you guys want to know more about the cold caps, Newbride (she has posted on here before) has tried them recently. I will pm her and see if she can enlighten us on the topic.
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Janny~ God Bless you & your family for all you have endured. You are an amazing STRONG woman and such an inspiration. I too am a runner...this has been one of the things I miss most about my recent surgery; having to stop running while I heal. I can't wait to get back out and hit the pavement! There is something "healing" about it! Our Race for the Cure this Oct. has a whole new meaning this year...it will be an honor to add your name to my race number!
One foot in front of the other...one step at a time!
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