April 2016 Surgery

Mom2Winston

Hello everyone. I had my nipple sparing/ skin sparing bmx on 4/28. Just wanted to share my experience for others. Went in at 5:30am, had the dye injection. Nurse gave me some versed right before but still had about 4 seconds of intense burning, but it was so fast that I don't think anyone should be too anxious about it. Came out of OR about 4 hours later, they had put me in one of those soft fabric front closing bras. I have one JP on each side. Had lots of nausea and vomting the first night but that went away by the morning to where I could get up to use the bathroom without vomiting. The pain was not so bad as long as I was laying down but when sitting up, boy, that was bad. However, I just took PO meds and didn't use any IV pain meds. I went home next day aftermy surgery. I have been taking Tylenol for pain do ing the daytime and Tramadol and Valium at night. I am able to use my arms and get in and out of bed pretty easily. My doctor said no shower until after the drains are out. And so far my nipples have looked OK. I wasn't able to go up size on my breast very much because it was skin sparing and nipple sparing and the doctor did not want to compromise my blood flow. However the shape is different from before because there is more volume on the top than before where I was more tears drop shape. Overall, I think the surgery went easier then I had anticipated. I won't know my final pathology report until I meet my breast surgeon on Wednesday.

nightowlhoot

Hi,

Just wanted to check in to see how everyone is doing.

I have a meeting with BS tomorrow. Only seen NPs post my 4/5 surgery. We will talk about Taxomifen or not. . . have any of you had this conversation already?

I had my first PT appt today. I have scar tissue to work through and massage. I am still not back to full range of motion. I thought I would be. . .

Hope you are all recovering well!

Night Owl

LRGO2016

1st Surgery completed today. Doing great. Pain is being managed so far. Yeah! My cancer risk is now minimized! Thank goodness for modern medicine!

Paulinek

night owl I saw my MO last week and we had the tamoxifen conversation. Even though I did chemo he wants me on tamox for 10 years because my oncotyping put me in the high risk category

Reckless

Night owl, I had my surgery on 4/19 (I never asked to be added to the list as I was in a lot of stress, but I read some posts beforehand - thank you, everybody, it was helpful). I had a discussion with BS and MO on Monday. I did not ask about to tamoxifen or not, the conversation veered towards to chemo or not. BS thinks no, MO yes, both are pro-tamoxifen. Ordered Oncotype to decide on chemo

nightowlhoot

reckless, what did your pathology results say? i thought chemo was a given if you have invasion of any sort. . . did you have micro invasion or inconclusive results on pathology? i always tell people to get second opinions and preferably at an academic institution. good luck!!!

i think most people who do chemo and/or radiation wait and have the tamoxifen conversation after they are done with chemo and radiation.

try not to stress. easier said, I know. i am working on mine which usually is related to hurrying around and kids and i have a move to another part of the state and the crazy of the end of the school year which is akin to the holidays. lots of events and gift buying and planning at the kids’ schools and for all their activities. piano recitals, choir concerts, blah blah blah. BUT I am GRATEFUL to be recovered enough attend and contribute to planning and such.

just need my arm good to pack and lift.

take care reckless and keep us posted.

still praying for everyone’s recovery!

night owl

Reckless

Thank you, night owl. Basically, the summary of the path results is in my sig - it is invasive ductal carcinoma, 2 cm, but lymph nodes are not affected. It is ER+/PR+, Her2-. I am being treated at a major university hospital in NYC. I will get a second opinion once I have the Oncotype results. The reason the conversations both pre and post op started with tamoxifen is because of hormone-positive, Her 2-.

Betsy918

Hi All..Just checking in. My BMX surgery with TE placement was 4/12, and I just got my drains out this week, and had my first fill in my TEs. Even before the fill my chest was really tight. Now I'm hearing that while I have the TEs I may always feel tight. Has anyone else heard this? I just drove for the first time this week, not for very long, and turning the steering wheel was a real challenge.If I stay this tight, I don't know how I'm going to be comfortable driving. I also seem to be really tired still, spend a lot of time napping. How's everyone else doing with getting energy back and not feeling like your wearing a caste iron bra?

Reckless

I had my BMX with TEs on 4/19 and the drains are not out yet. My energy levels is low as well, albeit improving slowly. Yes, I do have an iron bra feeling too, but not all the time. The PS said it might get worse with the fills, will get better once the implants are in

Mom2Winston

It has been exactly one week post surgery and I am feeling pretty good. Had my follow up with BS and PS yesterday, pathology came back all pure DCIS with negative lymph nodes so thank God for that. PS also removed my drains so I can now finally shower. I have full range of motion, still feel little tired after some activity like walking the dog but it is getting better every day. I tried on my old bras today and they fit exactly the same so I guess I didn't get any bigger with the implants. I had wanted to be a little bigger (was a B cup) but due to nipple sparing/skin sparing, PS said that he will need to keep it the same since I don't have the TEs and going bigger could compromise blood flow to the skin and nipples. I'll take it since now I am over and done. I am thankful to be able to keep my nipples. Best wishes to all the ladies on here and hope you all feel better soon.

GraceN

Hi all! Just wanted to pop in and say hello to all of you! I hope everyone is doing well!

I have had a wonderful recovery from my BMX with almost no problems at all. I have almost full range of motion and very little discomfort. I am feeling quite well!

So sorry to hear some had bad news on path reports. I'm still not sure my BS did enough checking on my nodes. He did a SNB and removed one more but I have since read that sentinal node biopsy should NOT be offered to anyone with a 5 cm or larger tumor, which mine was. So it leaves me feeling a little anxious. Top that off with, last night at almost a month post surgery I felt a hard cord with two knots on it directly under my SNB incision. The first knot is about the size of a small marble and very hard. The second is a little smaller and hard. I called my Breast nurse navigator who said I should call the BS. I have a message in for his nurse and am waiting to hear if they want me to come in or if this is normal sounding. I cannot feel it sitting up or standing... only when reclining back in a recliner or in bed. Strange. It is tender but not painful. Now I'm concerned he might have not taken enough nodes and I might be one who has "skipping" of node involvement. The BCNN says it does not sound like cancer but perhaps infection, especially since my immune system was weakened from chemo before surgery.

I sure can identify with those who are frustrated with Drs not agreeing with each other and not knowing if you are choosing the right direction to move or not. I had a rather interesting experience last week when I went to meet the RO for his opinion on my need for radiation. He said that with us girls who have done neoadjuvant chemo and had some degree of response, they don't know what to do with us and he totally left it up to me, saying there was a case to be made for doing rads but he felt comfortable with not doing it too if that's what I wanted. I ended up speaking with a surgeon in our church who has given me "free" advice before, and calling my BS for his advice and they both felt with a 5+cm beginning tumor, grade 3, I should do it. So I have decided to set that up to begin the week after next, but I am now concerned about these knots I'm feeling and whether the BS should have taken a third node since there is a thing called "skipping" apparently. Also I did start with a very large tumor and generally with MX they don't recommend the SNB for tumors 5cm or more. So did my BS go too conservatively with the lymph node removal? Ugh. I just hate second guessing and I probably shouldn't do so much reading and just take my Drs. recommendations, but when the RO left it up to me I felt I HAD to read up in order to make an intelligent guess! So it kind of forced me in to it. Now I find myself second guessing my Drs.

There is another thing that makes me concerned. My Dr seems to just ignore the fact that I have a combination of IDC and ILC. He says they just treat it all like IDC but as I have read a lot about the combination, and so has my hubby, and it seems there are very distinct characteristics of this combo and it has it's own set of behaviors. For ex. it is 30% more likely to develop a new primary tumor in the contralateral breast. This is why I had a BMX in spite of my BS not wanting me to! Also it tends not to be seen on mammography as quickly as IDC so is larger and further advanced when found. Yep! 5+cm on a yearly mammo sure fits that description! Also, the ILC part of it is more difficult to see in nodes! So now this makes me question whether my pathology is correct or sufficient. The big thing it effects is whether they radiate my nodes or not. As it stands right now the RO has not written orders to do rads on the nodes because the 2 that were taken were negative. However... should I be concerned about these cells being harder to see in the pathology? Ugh! I just want to get done with all of this, but there seems to be constant things you find yourself questioning along the way.

If anyone else has experience with the combination IDC/ILC I'd love to hear your experiences. Also if anyone else has experienced hard nodes or at least knots in the area of the sentinal nodes, I'd love to hear about that as well. I've had such a good surgery experience but making these decisions without completely agreeing Drs is so hard! I'll just be so glad to be done! On a brighter side... my hair is now about 1/4" and looks VERY gray! LOL! Who cares.... it's hair!

I'm praying for all of you and hope to you are all doing well!!!

grandma3X

Grace - ditto on everything you just said about nodes! I had ILC - 5X4cm, and only 1 SN was taken. The size of the tumor was unexpected, so I debated a long time afterward about whether I should ask for a complete axillary dissection. Still undecided, but having a prophylactic MX of the right side in a couple of weeks since imaging did not accurately detect my tumor. As for the hard knots under your incision - I have the exact same thing. Check with your BS, but my BS said it's scar tissue and not to worry. Plus, it's right at the edge of my TE and I think the PS tacked it down there. I can only feel it when laying down. I was fully expecting that the RO would recommend rads, because of the size of the tumor and the fact that it's ILC, but she did not recommend it. I'm a little conflicted about that as well. In the end, the only treatment I'm getting is endocrine therapy. I'm doing my best in lifestyle changes - eating super healthy and exersizing every day - but some part of me wishes the doctors had been a bit more aggressive. The only comfort I can take in all of this is that my Oncotype score was low, so hoping the single node was not a false negative and that the AI does its trick.

nightowlhoot

Hi ladies!

I am waiting at the BS now and he is running an hour behind. Grr! I did set my kids up with play dates...would miss dismissal otherwise.

Wow I am impressed by the full range of motion some of you have! That's great. I can't lift much yet or throw a basketball with my boy. I can lift my arm out in front of my body above 90 degrees which is much better than before but can't lift it to 180 degrees with my body or use it fully to wash my hair. As for lifting it out to my side that hurts my underarm area the most where it is connected to my chest. The arm circles loosen it up a bit.

ROM is overall better but not at pre-surgery. I do the exercises where you put your hands behind your neck and stretch with elbows up to ceiling and then down to floor but I can only put my left hand by my ears now. I went to PT yesterday and she said I have a lot of scar tissue and the band near Upper chest are actually pec muscles! I thought they were nodes too as there are parts that feel like a pea.The cord in my pit is also scar tissue. She recommended exercises and stretches, also a desensitization program of rubbing various textures across my left chest and armpit. She also recommended massaging the cord with 2-3 fingers for 10 min and gentle punching of the area she said was my pec muscles. She did say don't do anything that is painful. I would recommend also that you ask for a PT referral. Remember surgeons cut and remove and check the incision. They don't necessarily know how the body reacts...

Betsy918, I'm tight too, but stretches help. When I wake up I'm especially tight. The one where you put your hand on the wall and the stretch your body away helps me with the tightness. I am tired too but have two kids to look after. I drove yesterday-first time in 4 weeks. Looking over my shoulder to right was hard but overall ok. One u-turn hurt a little.

GraceN. I have a friend in the same situation and she consulted two other radiation oncs besides her own. In the end she decided to give it "all guns" and so after box, chemo, she just finished rx. So personal when the evidence is mixed. Some people look at quality of life and some look at reducing worry and stress. She's only 35 too.

I do want to say you can get your path reviewed...I had questions and worry about micro-invasion being missed. Ask to meet with him/her. Or get a second opinion on your tissue.

I finally got fitted for my prosthetic today. It is surprisingly comfy. The bras while not pretty feel good. I got a couple and we will see how it goes...I feel sad giving away my bra collection...

Well it's an hour past my appointment. And time for the PS consult. Just informed she is running late too.

Okay, take care everyone!

Night Owl

Jacklin

Hi everyone,

I"m finally home!! I had number of serious post-op complications that delayed my release from the hospital, I just got home this afternoon.

My ROM on the right side is wonderful as I had a simple prophylactic mastectomy there, but the left side where I had an ALND is quite a different story. I can raise my left arm about 70 degrees, not even parallel with my shoulder, yet. I will keep on trying the exercises and hopefully the ROM will come back with time. I see my BS on the 13th and start rads on the 17th. I will talk with my BS about the heaviness I feel in my left arm.

When I woke up from the surgery I looked at my chest and thought 2 things: (1) she really did take them both and (2) relief that the cancer was out of my body. OK, my chest looks really different from before but I haven't had any tears since and I had such a difficult time before the surgery. This really caught me off guard. I expected to be much more emotional.

The drain on the right side has now been removed, not the left one. Of course, it's the left one that's bothering me. It feels like a sharp knife point stabbing me multiple times per minute. Sometimes I can ignore it and other times I have to stop and breathe through the pain, like I did when giving birth. This too shall pass once the drain is out, which I hope is soon.

So good to be back and catch up on everyone's posts. Hope that everyone is healing well.

LRGO2016

Hmmm, so the stabbing pain I'm feeling might be related to the drains? I've been struggling with the pain levels since my surgery on Wednesday. My chest is so heavy feeling and my muscles in my back and my chest seem to be in a constant cramp. My pain meds were changed today to something more powerful than Tylenol. I am resting easier now and the discomfort is tolerable.

I've been sleeping on a heating pad - set to low heat. Ir seems to relieve the back spasms.

I've had the same reaction to looking at my chest. The fact that my breasts are gone, is not really bothering me right now. I'm so glad to have my cancer risk essentially removed, the loss of the breasts has not saddened me as much as it did before the surgery. I'm OK with this. We will rebuild them. The scars will fade. My life will return to normal with time. And I will be able to look back on this and realize how lucky I am to have learned that I had this choice to make, and to realize that I've made a life saving choice that I will never regret.

The pain I'm in now is temporary and short-lived. The gift of a new life free of cancer, is worth the short-term discomfort. I feel like dancing, not crying!

LRGO

Jacklin

Hi LRGO,

Sounds like we're both experiencing similar pains. I am sorry you also have to have them and hope they will subside soon. For me, slow-release hydromorphone has helped with the pain. I know it's still there, but it doesn't focus all my energy just on that pain. I find that every day something different hurts - at first it was a heaviness in my left arm, then it was the muscles in my back and shoulder, now it feels more like someone's punched me in the chest, front, back and side. I keep on trying to do the exercises I've been given and know that what I am feeling now is temporary and my body is healing.

I am completely with you on having made the decision to have a BMX, that we feel like dancing (albeit carefully right now with the pain meds) not crying. There aren't any tears, just relief that the surgery is over and I'm ready to move on to radiation and get the treatment done. All the scars, physical and emotional, will heal, we just need to give them time to fade, right?

Heal well.

LRGO2016

well said Jacklin. This initial and painful period will pass. I have no regrets, in spite of my current pain. I've beaten the odds that were stacked against me. I'm so glad I got genetically tested. I would not have known that i was destined to develop cancer and would have been devastated to only catch it after the fact. I gave my husband permission to share my choice and decisions with others. As a result, another young lady we know has chosen to be proactive in her screening. She says I may have saved her life. She found a lump, has gone to the doctors and has asked for genetic screening. I hope her lump is benign and her genetics are clear.

If I can be an inspiration for proactive screening and alert health care for my friends, then I have served a great purpose in this life.

Angtee15

Hi there April surgery gals! I'm checking in from the May thread. Wondering how long surgery lasts for bilateral mastectomy with immediate expanders placement.

Thanks! I hope everyone is doing well...

Alex276

My surgery was 6 hours. I only had two lymph nodes removed.

Reckless

Not sure... I got anesthesia about 3:30 p.m. and awoke after midnight. Probably 6 hours, as the doc called my family after 10 p.m. that they are welcome to visit me shortly. Also had 2 nodes removed.

LRGO2016

My surgery (prophylactic with TE's), took 4.5 hours. Plus about 2 in recovery. No node removal.

Pretty quick!

Good luck!

mccormcindy

woke up after surgery (MRM left + simple mastectomy right) to severe pins and needles and itching...no rash or redness....for 2 days and nurses had no clue what to do. my husband knew that i get these once in a while at home whenever i get too hot or stressed and tried his best to cool me off. they also had an ace bandage around my chest that i complained being too tight, never adjusted it and told me to leave it alone til my follow up appointment (a week later).

the Narcol in the hospital worked well but the Tramadol\tylenol not very effective on me. i had such a hard time sleeping with the pain from the bandage being too tight, i could barely breathe, and it rubbed against my underarm. at my follow up, the nurse said that i could have adjusted my ace bandage if needed, so why was i left to suffer? and once bandage came off, i noticed huge craters near both underarms even though only my left side had lymph nodes removed. my incisions look inverted and there is a small triangular pocket of skin on the edge of my left side incision....it has yet to even out. it feels like it hardened that way. i have never seen an image online that in anyway looks like my mastecomy....like mine is deformed. he said he left me some extra skin just in case i opted for reconstruction later, but looks like i won't have a choice at this point. i had so many issues with the mediport, my body basically constantly protesting, still feels bruised and i had an inflammatory allergic response to the internal stitches, which widened the incision, or incisions, since i had to have the 1st one replaced because it didn't work. so, i opted out of reconstruction surgery fearing rejection from inplants. i am almost 50, i would be happy being flat chested.....oh, but this really feels botched. or does the appearance change over time? and, oh, the pain under my arms, feels like fresh paper cuts but very deep and constant. i have been working my arms gently and lots of stretch exercises, easy, progressing every day, range of motion is very good, it is the constant stinging pain...read that it could be from the friction, buldges under both armpits, most looks like leftover fat pockets, i am sure pre-existant even though i was a B cup, i had some side fat. my arm, in the area that went totally numb, has already regained some feeling and a few spots here and there are still numb but getting better each day, been using touch therapy for 2 days now, really effective. center of chest still sensitive though, feels like i got punched there, no bruises yet to show up anywhere. my drains were removed at that follow up, a week after surgery, never had more than 25cc per 12 hours on either side and last couple days were barely 5-10 cc's. was told that was very good.

i was not a complainer in the hospital, i am always a patient patient and understanding, but get home and wonder why they didn't address my pins, needles, itching problem, and why they told me to leave the ace bandage alone. i had written instructions well before the surgery to check the bandages often for redness and bleeding and clean around the drains incision with peroxide daily. well, how could i if i can't unwrap the ace bandage?

feedback much appreciated.

are we allowed to post pictures of our surgery site?

thank you.

LRGO2016

I'm sorry you had a difficult time mccormcindy.

I too had conflicting instructions from the surgeon and the nurses. I'm not sure where the communications break down but they do!

My incisions are also puckered and wrinkled with irregular profiles and deep creases. If I look at them too long, I break down and cry (not like me). Because I opted for TE and implants, I know I shouldn't be too concerned about appearances yet. I'm assuming these irregularities will expand and smooth out with time and the expansion process I'm preparing to endure.

In your case, I would ask your PS when and how he is going make your current results more smooth or asthetically pleasing. He won't know what you are hoping for if you don't explain your disappointment or concerns. I'm sure there are revision strategies that can help you achieve an acceptable result. I suggest you schedule that discussion soon so you can register your concerns early.

I have been labeled as a high anxiety patient because I had lots of pain immediately post surgery and complained that the Tylenol was not working. I have an unsympathetic PS who will not prescribe anything stronger than tylenol. I also ask LOTS of questions. Call it what you want, but I prefer to be informed, educated and aligned with my treatment and Doctors... unfortunately my PS does not provide written plans for treatment, the assistants take notes and record only the critical patient instructions in post visit notes. So there have been several discrepancies between what he told me and what the nurses say he told them. Capture the things you think were miscommunicated and ask your surgeon to comment on your observations. He may not be aware that his instructions are not being followed accurately or misinterpreted.

I'm not sure about posting pictures. You may want to private message a moderator for that question. I believe there is also a scar thread in this website somewhere. I'll look for it and will post a link if I find it.

I hope you are able to reach an acceptable solution.

Here's a link to the rules for the site. I skimmed it for info about pictures but did not see anything banning self photos of results. I would contact a mod before posting. https://community.breastcancer.org/help/rules

Now to look for scar help stuff...

Ok, a quick search by me and the mods revealed the scar treatment stuff I've read has been spread throughout many different topics. So I have started on for us! Please feel free to post to it ladies! Here is a link;

https://community.breastcancer.org/forum/91/topics...

weimlover

I had a dmx with te placement both breasts and sentinel lymph node biopsy on both sides underar

weimlover

Has anyone else gained weight/ fluid post surgery that won't seem to go away in their belly area ? Plus anyone coming off their pain meds and having depressive side effects from withdrawal? I took Norco

Alex276

I am having serious anxiety issues the last week. It is mostly to do with my expanders. I get worked up and feel like I can't breathe and just want the expanders out. I'm hoping after my first fill they will get a little more comfortable. I started Prozac this week and have Xanax for really bad days. I also took Norco for pain. I have actually started taking it at night again to help with comfort in sleeping. Most of my anxiety happens at night.

weimlover

Alex, every time I cough, seasonal allergies, I feel those tissue expanders like little plastic spoons poking me. I read somewhere that someone said it was like wearing a wire bra all day long. It's definitely unpleasant. I'm sorry about your anxiety. The BS and the plastic surgeon gave me phenergan Vicodin and norco. I'm convinced that now I'm off norco the depression, swelling and nausea appear. I think norco may have bad after affects

Jr114

Hi Alex...sorry you find yourself here. I remember reading someone saying the te felt like wearing an iron bra and I could relate to that. I know that I was in terrible discomfort for the first several weeks after bmx . I described it like an elephant sitting on my chest. I would wake up and not be able to take a deep breath. After about 3/4 weeks I got my first fill.,Then for some reason it felt a little better. I had about 8 pillows that I slept with to prop myself up bc I could lay down. I had taken Valium to use to sleep for the first couple weeks but than switched to Xanax as needed. I found that walking helped during the day helped just to get out and move I hope you find some relief. I can tell you it does get better.

Alex276

Thanks for the responses ladies. I'm really struggling and all I think about is wanting to take the expanders out. I feel like I can't take a real breath and it sends my anxiety into over drive. I can take the pain it's just the intense tightness and pressure that are literally making me crazy. I've never been a big medicine person before so having to take all of these meds just to get through the day makes me sad. I'm really hoping that there will be at least a little relief after my first fill on Tuesday. If I can get a sense that this will get better I might just make it through the expander process. In the middle of the night last night I had decided to have them removed and just have one of the flap sureries. But I really hope I can finish the expanders that will give me the best outlook of what I truly want, I just have to find a way to stick it out

LRGO2016

Hey Alex276, you and I may be getting our first fills on the same day!. I too have a constant tightness that is annoying. It feels like I have a wide belt strapped so tight that I shouldn't be able to breath. I CAN breathe fairly easily now, just 1.5 weeks after my surgery. But it sure feels like that elephant crushing me. Wierd. Doesn't really hurt, but it does make me tired! I'm sticking it out, but have seriously wondered if this process is worth it. I want foobs enough right now to keep going - mostly for the ease of "normal" living in the future, and regaining a sense of sexual allure ( my own mental state) and to appear more normal to my husband.

So I choose to endure this process and hope the outcome is good.