January 2016 Surgeries

SVGsurvive

Sending my official welcome to violethope & Mominator!

violethope, hope your biopsy went smoothly. Let us know when you & your medical team determine your surgery type.

Mominator, I've been following the Nov. surgery sister thread for so long I feel like I know you! I'm glad you have joined us and I can imagine how exciting it will be for you to take this final step of recon. Will you need any nipple recon after?

Gemma12, such great news! Welcome home and may your healing continue smoothly.

grandma3X, let us know what your PS says. I hit a dead end w/ my BS today asking about getting any topical numbing cream *or* the lidocaine injection for the SNB prep. I think I'll add some extra volume to my yelp when I get injected next week to help demonstrate to these people that a "bee sting in the areola" isn't a "no biggie".

QUESTION: For those with recon surgeries, have you been actively contacted by your PS for pre-op discussions? The last time I talked to my PS was in late October during a short office visit. I've since received no phone calls, emails or written materials about this portion of the surgery or the bra/camisole situation. It all seems strange & passive to me.

JerseyRenee01

Hi Ladies!

My Lumpectomy with SNB is next week. Thursday, Jan 14.

My nerves are already getting uptight! Only surgery I have ever had was Wisdom Teeth! 😫

BlueHeron

Arrrgh! I'm so frustrated!!! My clinical case is complicated.... Tumor looks small, 6mm. But there is a large area of suspicious looking calcs that biopsied negative, but that was just a sample and nobody could be sure. Surgeon recommended Lx, and would see if margins were clear at surgery, could always return for Mx. But then I met with rad onc yesterday and she reviewed everything and doesn't think clean margins would be enough to decide that area is OK, and she thinks I should have a Mx! I agonized over this decision once, and now I have to do it all over again! I'm meeting with the surgeon again today to discuss.

woodstock99

@SVGSurvive - I did manage to get the EMLA Cream prescription & wish our dates were further apart so I could mail you my tube. Sorry

As far as your question about passive BS & no info - YES YES YES.

As a matter of fact, I called & vented yesterday to the "nurse navigator" whose role I do not understand about the lack of info provided in advance to prepare. I am a planner and not one thing has been sent or provided to me. It;s been like pulling teeth from BS's nurse who is the gatekeeper and responds to their system emails very curtly and once they reply, you can not reply back so I have to cut & paste and send a new message.

I told the NN yesterday that it seemed like once I signed the consent form, I became a number in the system. Very upsetting & now I am second-guessing my decision to go with this BS vs the one I personally liked better but did not like the hospital or other services. Too late now.

DecisionFreak

Oh, no, so sorry BlueHeron. Do you have time to get an unbiased second opinion.

I will keep you in my thoughts.

BlueHeron

I thought about a second opinion. But I feel like I'm not sure how much it would help. My mammogram is a mess to read, 3 radiologists and the rad onc all agree about that much. They all agree that they can't demonstrate nor disprove other areas of disease, and can't really point to specific areas to biopsy for more info. When I met with the surgeon (who is supposed to be excellent) the first time, he clearly thought I was a very good candidate for Lx, but I'm not sure what he will say now, after additional meeting with the radiology team. I guess I will find out at 1:00.

BlueHeron

SVG, my primary care doc ordered the EMLA cream for me, she's great! Maybe you could ask your PCP

DecisionFreak

BlueHeron, I hope that all goes well. Keep us informed.

edwsmom

HI ladies,

Do any of you know anything about nipple sparing mastectomy? I've decided to proceed with BMX for my peace of mind.

My PS is recommending this route to me, but there's a small part of me that's afraid to leave anything behind. Has anyone here had nipple sparing mastectomy or know anything about the risks of leaving tissue behind?

DecisionFreak

eedwsmom, I am throwing in my two cents. I have read a little, not much, about nipple sparing procedures. First, leaving any tissue behind leaves some risk. You will still have risk after a BMX. It depends on the level of risk that the doctors say will be added to the risk that remains after the BMX plus the added risk of leaving breast tissue behind plus your ability to manage the risk. The nipples may have impaired or little sensation after this surgery I think. Confirm this point with someone who knows for certain. Are you going to wake up in the morning and worry about your risk? If you consider that you may be left with diminished nipple sensation, is nipple sparing worth added risk to you? Since doctors think my risk is low, I am managing it with lumpectomy and breast surgery, as mastectomy is considered too radical for my current condition. I can live with the risk.

If it were me having a mastectomy, and it could happen at some point to me too, I would go ahead and have everything removed. It is a very personal decision, though.

Jr114

Thank you everyone for the good posts. I now have more questions to take with me for my pre-op appt on Friday. I had two excisional biopsy and felt different after coming out of it afterwards. I am sure it was different anesthias. I also am have a snb at the time of surgery I was told that they would be numbing the area a head of time so I will be definitely asking some more questions at my preop meeting.

Svgsurvive- I am having surgery on the 13th and my ps had me come in on 1/4 for my ps preop visit to go over everything again, give me my post op instructions, med prescriptions for after and to get me scheduled for my post op appt. I would definitely give them a call.


Great to hear everything went good gemma12

SadieSue50

Surgery - tram flap - scheduled for 1/29/16

woodstock99

I wish my BS would have a preop visit. I went for preop tests (labs & EKG) and they scheduled my first post op appt but post op insyructions & when I asked about prescriptions was told that I will be given them at discharge. I guess everyplace is so different.

grandma3X

SVG - My PS agreed to having the block placed ahead of time (I have a tendency to worry about things that never happen....). Also, Amazon sells a 5% lidocaine cream called Topicaine for tattoos - this may help numb the breast for the SN localization (I was looking for something myself but the NN told me they numb it at the hospital).

I have been in constant contact with my BS through email and phone calls. I can't say enough about this woman - she is really the greatest - answers every email promptly, even for my stupid questions, and has called a few times when my questions were complicated. However, I have not spoken with the PS since my first visit. When I tried emailing her, I was told by her assistant that she does not answer emails. When I tried to call her this morning about the block, I got someone who said that they would email my question to her! I then heard back from her assistant that she agreed to the block.

Edwsmom - I am getting nipple-sparing surgery. The BS said that she would biopsy a sample of the tissue at the nipple when she does the MX to see if there is any cancer near it. If it comes back positive, she would then remove the nipple. She agreed to doing nipple-sparing because the cancer is far enough away. I'm still a little nervous about leaving anything there. I did read something online about how the nipple is at less of a risk for recurrence because there is no fat layer between the breast tissue and skin of the nipple, so they remove all of the tissue, whereas in the rest of your breast they leave a layer of fat, which could be hiding some cancerous tissue.

Best wishes to Neen and Vidrine! I hope you are both home recovering and on your path to good health!

Mominator

@Svgsurvive: I didn't know you were following us on November surgery. I look forward to getting to know everyone over here.

I'm particularly glad to be getting rid of the TE's. The left one has drifted into my armpit and spasms first time I move every morning, and other times as well. I had a nipple-sparing BMX, so I won't need nipple recon.

@edwsmom: During the nipple sparing mastectomy, the BS will remove tissue right behind the nipple and send it to pathology for testing during surgery. Pathologist will give a report so BS will know whether or not nipple can be spared. The risk associated with leaving nipple behind, presuming it passes above test, is about the same as a Mx.

My BS said that she's only had one nipple that could not be spared in all of her NSMx's. Patient had a lump in another part of her breast, and they were surprised that the nipple also tested positive. She also had one patient have a recurrence in the scar tissue of a Mx, non NS. So, anecdotal, the odds of recurrence were similar.

Sending good thoughts to our surgery sisters for this week.

Jr114

Edwsmom - I am also going with nsm, my area was far enough away that they felt I was safe to try and keep them. My bs said that they will biopsy the area near the nipple and I may have to have it removed. It was a hard decision to make but emotionally I think it is better for me

grandma3X

Here's a link to the discussion about nipple-sparing surgery and the risks for recurrence that I mentioned above:

http://medicine.stonybrookmedicine.edu/surgery/blo...

One thing that may be an issue, however, is that the nipple may not be correctly positioned after implant so the surgeon may have to do some adjustments. I'm not sure what that entails - does anyone know more about this?

SVGsurvive

Welcome to our newest January surgery sisters: Kaybee2545, JerseyRenee01 and SadieSue50.

Thanks for the replies about the topical cream! I'll push my team for a prescription or confirmation they'll use it. I don't want to sneakily use anything the morning of w/o their consent in case anything goes wrong. The pre-op instructions came w/ wipes and explicit instructions about keeping topicals off the surgical area, so I'll abide.

I called my PS' office today. They connected me to a nurse practitioner who apologized profusely that I had to contact them before they contracted me. At least in my case (Kaiser), the PS nurse is the one who handles the post-op meds/anti-biotics order (which I can apparently pick up as soon as this Friday - a week before the surgery). She's even ordering me extra anti-biotics in case I have to keep the drains in longer than expected. She's emailing me a ton of info and we have a follow-up calll in the morning to answer any q's I have. Among other things I learned they'll give me a post-op bra that I'll wear 24/7 for 3 weeks and then just during the day when I'm active. They suggested I get fitted for a back-up bra before the surgery so I have a spare.

Mominator - I was a quiet November thread follower. I considered it a dress rehearsal; I wanted to experience all of your surgeries in realtime as they were happening and as recovery started.

I'm also doing nipple sparing. I felt blessed to be a "candidate" given all the criteria, but am concerned about the high % of failure (it just "falls off" - what?!) and potential asymmetry as grandma3X notes above. My PS had implied it's simply because expanders can shift and skin can move, unlike tattooed areolas which are perfectly placed. I'll ask them tomorrow about what a symmetry adjustment might entail.

woodstock99

Has anyone researched pain meds for when you go home?

My BS was going to prescribe tramadol but I had a horrible experience with that once and it gave me hallucinations so I told her nurse no way.

Then she said tylenol 3 or oxycodone.

I am hoping to not be on any pain meds long but also do not wnat to take anything that will make me feel even worse.

Any thoughts?

Thanks.

SVGsurvive

Balthus, they told me today I'm getting Percoset because it's known to cause less nausea than some of the others. I have some Compazine pills left over from chemo that they said I could take alongside the Percoset if I did feel nauseous. Once the pain lessens I plan to shift to good ol' Tylenol.

woodstock99

Thank you. I will ask for the Percoset.

I used to take Darvoset for my fibromyalgia before it was banned by the FDA and I never had any problems with that.

I have some left over but they are at least 7 years old so likely not to work too good.

Kaybee2545

Hello, I just had one done on Monday. From what I was told, as long as there is enough space between the tumor and the nipple, they can do it without increased risk.

Kaybee2545

Hello everyone,

Just wanted to introduce myself. I'm 42 with 4 kids aged 1-12 and just had surgery Monday. I was more scared of the actual surgery than the recovery, so I'm glad it's over! If I could fast forward 2 weeks though, I'd be much happier! I have a family history of cancer and was positive for the Chek2 gene, so I went with a bilateral mastectomy with reconstruction instead of opting for a lumpectomy. Please feel free to ask any questions!

Kessa619

Hi, Kaybee2545. Congratulations on having the surgery behind you. Are you home already? I am like you...scared of the surgery more than the recovery. My BMX with TEs is a week from today. How long was your surgery? How are you managing with the pain? Best of luck to you

CoolgrammieNC

helloKaybee, glad to hear everything went well. I to am going to have bmx w/diep reconstruction. What type did you have? I can't believe you just had surgery and already feel like posting, remarkable. I feel so much better knowing I can ask you questions. thank you...hope and good thoughts that everything progresses well for you.

Merymete

Yay Kaybee! The hardest part is over, now focus on your recovery. I'm in the same boat as Kessa, nerves are starting to ramp up. We will get through this!!

Jr114

Hi Kaybee....glad to hear you are now on the recovery road. I am having surgery next week. I am 43 and having similar surgery. How are you managing your pain? I am nervous about the drains. Glad to hear you were up to posting here. Hoping everyday gets a little better for you!!!

woodstock99

Hope Kaybee2545, Gemma12, Neen56 & Vidrine 1 are all doing well and sending my best to MKTCA for her Lump tomorrow.

Kaybee2545

Hi ladies! I had my surgery at 10am on Monday and had to be there at 5:15am for the dye injection so I had plenty of time to be nervous. I have never had any kind of surgery or health problems, so this was all very new to me. I was really scared of the anesthesia process, etc. My surgery took 4.5 hours which seemed longer than I would have expected. It took me a long time to wake up after, close to 90 minutes. It amazed me how much work could be done and have no pain or awareness of it. They had oxygen on me and it took me awhile to be able to open my eyes once I started to wake up. I had asked for any possible nausea medicine beforehand based on a friend's experience earlier this year when she was sick for a full 48 hours after this surgery. I was terrified of that because I am susceptible to being carsick, etc. My cousin told me to just ask for everything ahead of time because they may or may not give it to you. It was probably around 5pm when they moved me to my room. I wasn't really in any pain, just not able to move a lot, but I was comfortable. I still had my IV and oxygen going, so getting up was a pain. I finally made it to the bathroom with someone watching, but I was able to get up without help (very slowly!) and she said if I was comfortable myself after that I wouldn't need to call anyone. I held off on additional pain meds because I really wasn't feeling much, but by around 11pm started feeling some soreness, so I asked for something so I could sleep. They gave me one dose of morphine, but wanted me to stick to pain pills after that. I was home by 1pm the next day. The pain has not been intense, more just soreness. I have been trying not to take too many pain pills because of the constipation. I spent nearly an hour in the bathroom yesterday, sorry for TMI, but get your Colace or milk of magnesia ready! I was thrilled that I could get around by myself. My husband was planning to stay home for the week if needed, but I told him yesterday he might as well go back to work because I was able to fend for myself. I wasn't even sure if I'd be able to empty my own drains, but it has been easy, just a pain to have them. I managed a shower yesterday which other than trying to figure out what to do with the drains, felt great. I look scary, but I had looked at enough "after" pictures that I was prepared. I don't really have bruising, but I am very lopsided at the moment and one side is lumpy. And of course the stitches from the incision. I had tissue expanders put in and they were able to inject some saline, I'm not sure how much, but they were able to get more in the right side. I can use my arms more than I thought, just not for anything heavy. For anyone that has breastfed, the way I feel now is if I were breastfeeding and became engorged. Just like my chest is exploding and tight. It's not really painful, though, just more uncomfortable. I am not sure if my experience is normal or not. My two friends who had this done are close to my age and found it to be much more difficult, so that is what I was prepared for. I don't believe either one could get up without help for a few days. I did have a mini-meltdown for the first time this morning because I've been telling everyone how great it went, how thankful I am, how well I'm doing, etc., and it's really not that easy as I'm making it sound, so when my husband was leaving I just started sobbing because I do just feel useless. We have 4 kids and he is responsible for getting them everywhere right now which is really hard. We also work together, so he has to pick up my slack there as well. I just sit in front of the fire all day reading or on the computer and while I know it's what I should be doing, I feel really bad like I'm being lazy. Sorry so long, but just wanted to share my experience! Hopefully when the drains come out I will be feeling more human. That's the other thing... I'm not sure if I am supposed to just do nothing so not as much fluid drains and I can get them out sooner? I believe more activity increases the output, so I'm not sure what is best. My first appointment is Tuesday, and I'd love to be rid of them then!

Kessa619

Hi, Kaybee. Thanks so much for sharing your experience. I don't think you should push yourself, and I definitely do not think you should feel lazy for allowing your body to recover from major surgery! Obviously, I don't know your hubby, but if he is anything like mine, he is probably relieved to have a concrete way of helping you (taking care of the kids, picking up the slack at work). I think that type of support comes easier to some guys than sharing emotions. Continued thoughts and wishes for a speedy recovery!