SEPTEMBER 2015 Surgery Sisters

39andhip

Molly - thanks for being such a cheerleader for all. I hope you are feeling better. I am four days post-reconstruction and getting ready to leave the hospital in a few hours! It has been a very long four days but I'm very happy with the care I got and the surgical outcome (so far anyway ). Day 2 post-surgery was the hardest for me, as they took away the IV pain meds, catheter, and had me get up and out of bed all at once. That was a bit much, but then the next day I felt so much better. I'm looking forward to continuing my recovery at home.

39andhip

Gardenergirls - I wish you strength during this time. I really didn't want to have a mastectomy and cried a lot as I came to terms with it. I even had a good cry a few nights ago in the hospital. It is a hard thing I'm not sure anyone can understand unless they have been through it. That said, I've found the whole process to be much less traumatic than I thought it would be. There are some incredible reconstruction options and I hope you can benefit from them to help make all of this easier. I definitely see plastic surgeons in a new light now. Hugs and strength to you.

Gardnergirls

Thanks for the support Everyone! I'm feeling a little better but I'm sure the Xanax is helping also 😁 trying to get everything ready prior to surgery has been a help, to keep my mind occupied as well. I just know deciding to have a lumpectomy and having to continue to worry ever time I go back for another mammogram wouldn't work for me. After seeing the PS I'm feeling slightly better. He's saying though I most likely will not have feelings in the nipple again. That's is something that I have read but hoping that it will eventually return

solfeo

Oh no! My husband has come down with a staph infection 10 days before my surgery. They are testing it for MRSA. Frantically decontaminating him and everything!

KellyAnne13

Hi ladies,

Would love to join your group. I'm scheduled for a BMX and reconstruction on September 21, just 9 days from now! Just found this group and haven't read through it all yet but glad I am not alone

MarieTherese

solfeo

Oh no- that's the last thing you need. So sorry

MT

Gardnergirls

I'm curious and I'm just uninformed as to why some people are undergoing lumpectomies then later are having mastectomies. Sorry, i hope this isn't a dumb question.


Actually can't believe how many of us are affected by breast cancer under the age of 50! I was just diagnosed at 48 but see many others much younger 😕

queenmomcat

Gardner: no dumb questions!

There are a number of reasons why someone would start with a lumpectomy then proceed to a mastectomy I don't pretend to know all of them, but a big one is medical necessity: the oncologists realized, upon seeing the pathology report from the first surgery, that the cancer was more extensive or aggressive than they'd originally thought.

Another possibility is (as nearly happened for me) a subsequent lumpectomy/partial mastectomy would have "an undesirable cosmetic outcome"--the woman's breasts' size relative to the amount of tissue removed. But that's a more wildly variable issue.

Gardnergirls

Thanks queenmomcat! Another question that maybe I've missed is what kinds of tops should I purchase. I see button ups or zippertops but I Normally wear an xl and not sure if that's enough room to hide the drains. Any thoughts

queenmomcat

Again, others might be able to give you more specific advice, but IIRC (I didn't face this particular issue) is the button-up/zippered component is because you won't be able to raise your arms above shoulder height in the recovery period. What to do about the drains is another question. Carpenters' tool pouches or hoodies?

PMR53

Gardenergirl

I had a lumpectomy in May and refused radiation that's why I am getting Uni MX on right October 7 th. Left side is clear as I had 3D mammogram last week. Dreading it but getting TE at same time. 

PMR53

Molly50

solfeo, I will add you and your DH to my prayer list. I am praying no MRSA for him and your surgery won't be delayed.

Gardenergirls, my lumpectomy revealed much more extensive cancer than imaging showed. I have lymph vascular invasion and still didn't have clean margins after her going back in for more. Pathology from my umx showed DCIS into the bottom of my nipple so it's a good thing she removed the nipple during the mx. I am finally cancer free after the second surgery!

Welcome KellyAnne13!

As for clothing, get button up or zip up shirts. You can order pink pockets which you apply to the inside of your shirts to manage the drains. Just Google them.

ra1950

Hi all. I had my 1st post-surgeon visit Thurs. and the results were overwhelmingly positive. Margins were clear on the tumor. NO re-excision! DCIS was present but not extensive. PR/ER/HER2/KI67 results and scores remain the same and that is all excellent. The tumor was 1.8 cm rather than 1.7 as originally thought bjt that's not a big deal.  I see the mo and ro on Tues. to confirm next steps. I am feeling very blessed and yet somewhat guilty that my result is so good and and so many others are struggling. These last months of testing, waiting, diagnosis, waiting, surgery, waiting (did I mention waiting?) have been at times excruciatingly difficult and definitelysoul-searching. I just can't determine why I am feeling this guilt. Maybe it's not guilt...I just don't know what else to call it. Thanks for "listening". 

Molly50

ra1950 hooray for good news!!

solfeo

Thanks for the kindness ladies. I don't think I can stand another delay. My son had MRSA last November and it took 4 months to get rid of. I'm about ready to make DH move out, or maybe I should! The good thing is that since we have dealt with it before we do know what to do (no one else caught it last time), but its hard work and a lot of extra stress keeping it contained. Didn't need that right now.

39andhip

Gardnergirls - After my first lumpectomy for IDC, they found extensive DCIS, and I actually had one positive margin. The DCIS didn't show up on the mammo or MRI, so it was an unpleasant surprise. I had a re-excision surgery, but after that I had three positive margins for DCIS (WTF?). Obviously I just had really extensive DCIS. I do not have large breasts (B cup), so at that point a mastectomy was the only logical choice, unfortunately.

As for shirts, button up and zip ups are nice, but I think the biggest problem I've found is that there aren't many comfy button-up shirts, as these tend to be dressier. Another option is very loose shirts you can either step into or put on over your head without lifting your arms. I have a bunch of zip-up sweatshirts with inside pockets where I can put drains, but I don't like them to be directly against my skin. So I've been wearing a loose tank top underneath (my old maternity clothes tank tops!). I'm so gross right now I don't even try to hide my drains, but if/when I go out in public, I'll drape a scarf around my neck and hide them in that. (My BS even commented on my clever scarf contraption, lol.)

Solfeo - so sorry to hear your news! I understand that point of not wanting any more delay. My PS told me there was a good chance my nipple would die if I proceeded with the surgery on 9/8, and as much as I want to save my nipple, I decided to go ahead with the surgery just because I. cannot. wait. anymore.

Navigatingthru

Hi fellow sisters,

Update - 6 days post-surgery

All four of my drains were taken out on day 6, at my first post-surgery follow-up. Yay, very pleased. Swelling gone down, but still some present along with some bruising. Overall, surgical site is healing well. Arm mobility very good. Continuing to do daily arm exercise regime given by surgeon for post-care and overall energy is returning. That said, still need lots of rest and small naps (not daily). Next Thursday I meet with surgeon for initial pathology results.

------------

On September 8th, 2015 I had a bilateral masectomy with tissue expanders and sentinel lymph node biopsy. Surgery was about three hours in length and a thoracic epidural was used. Must say, the epidural was fabulous and pain was managed very well. Although it was scheduled as day surgery (imagine!!), I ended up with a two nights stay in hospital. First night was as a result of the thoracic epidural and the need for continued use, post-surgery, for pain management. It truly worked like a charm with pain management and was taken out the next day. The second nights stay was as a result of a drain issue. A bit of extra swelling was causing some concern and the docor wanted to monitor the drains to ensure they were working properly. Its now 5 days post surgery and I am healing well. Pain is at a miimum and I'm currently only taking regular tylonel as neeed. Mobility in arms is surprisingly good. I took advice and started moving about and walking soon as I was able to which also seems to be helping along my recovery.

If anyone is going through this in the Ottawa area and wants to connect and share experiences and resources, please send me a message.

For all those who have or will go thru surgery, all the best to you and know that you are not alone. The network of us continues to grow and is only a click away.

All the best fellow sisters :-)

Gardnergirls

Thanks everyone for helping with my questions. It is so nice to have this group to come to for help and answers.

Three days and counting.... Glad to also see everyone is doing well quickly after surgery. I've been a crying mess today even though I have made piece with my decision. It's just the waiting I guess. My original surgery was scheduled for tomorrow, but the PS had to reschedule. Both my breast surgeon and plastic surgeon work in unisen so that I'm not under anesthesia any longer than needed.

Lovey1226

Hey all and welcome new friends! I had the SLN biopsy on Friday. They took 2, and said visually they look nice. Visual isn't anything until the path report blesses them as clear.

All in all it was not bad, I am a hint sore still, but manageable. I went ahead and iced my boob and incision a bunch post-surgery. I only used advil for pain. I was pretty out of sorts on Friday, but felt better Saturday morning. By Sunday, I had enough range of motion to wash my hair reach in a cabinet, etc.

So, right now, I wait for results....

solfeo

Unfortunately the worst has happened. The lab culture isn't back yet but based on the fact that my husband's staph infection did not respond to the antibiotics he has been preliminarily diagnosed with MRSA. We were in the emergency room all night, he's on heavy duty IV antibiotics, and they admitted him early this morning. Surgery scheduled this afternoon. They are going to try to save his thumb. And I can't be there for the surgery because I have appts with oncologist and PCP for pre-op clearance for my surgery next week. If they even let me have it now that I have been exposed to MRSA.

I always always always try to keep a positive attitude but this one is testing me. Big time.

rainnyc

Solfeo, just wanted to tell you that I'm thinking of you and your husband. Hope he responds quickly to the antibiotics and you can keep your surgery date.

queenmomcat

Solfeo: I wouldn't blame you a bit if your positive attitude slipped, just a bit, right about now. Will you be able to at least see your husband after the surgery? sit with him before he goes in? (and did you ask them about MRSA?)

Melkirk13

Also getting ready for a BMX on 9/17...just 2 days to go. I thought I've handled things pretty well up until now but now thinking I'm due for a breakdown. How is everyone handling the pre-surgery jitters? I've had many surgeries but never this much concern...because the recovery will be so long.

Molly50

Hugsto you solfeo.

mye

Welcome New Sisters! I have added I believe everybody to the list above. Please let me know if I managed to miss you and you do not see your name.

Gardnergirls, it is good to hear that your recovery is going so well!!

Xjerseygrl and Cchix...thinking of you and wishing you the best!

39andhip

Solfeo - Pardon my French, but what a shit storm for you. If you were not experiencing negative feelings about this, you would not be human. Hugs and strength to you!

rainnyc

Melkirk, I'm 5 days after you with my bmx. So far I have been handling the pre-surgery jitters by nesting: doing some desperately needed cleaning of the kitchen, huge to-do list. But I'm also waking up in the middle of the night feeling, well, jittery. Not sure what to do except put one foot in front of the other... Good luck to you; I hope your surgery goes well.

MarieTherese

solfeo

I am so so sorry- that is awful.

mye

So I had my pre-op today with my PS. She said she generally keeps the TEs in for about 6-8 months. Isn't that a bit excessive!? She said she wanted my skin to heal properly since I am having radiation after surgery. For those of you having BMX w/ TE and radiation, how long does your PS wait to do the exchange?

It looks like I'm going to have my surgery on the 18th now, moved from the 22nd. Trying not to think about it too much, because otherwise it will make me too anxious, I am starting to feel nervous for sure. For me it's especially the anesthesia part that scares me and getting closer to knowing what is left of the cancer since I had neoadjuvant.

Solfeo, I am so sorry for what you have to deal with on top of everything else. I hope you will keep your surgery date.

solfeo

Thanks all! He came through the surgery well and his thumb is expected to heal quickly with no loss of function. This is the first time he has been in a hospital overnight since he was born, and since he's not the kind of guy who ever takes a break or relaxes I think he's almost enjoying the attention. He will be there until at least Wednesday for the IV antibiotics, then they might send a visiting nurse to our house to administer IVs here once a day for a few more days.

The only problem I see is that they want me cleaning and packing his wound, and I don't think I should be doing that before, during and after my surgery. I will speak to the surgeon about everything, as soon as we get the lab culture back and find out for sure what it is. That should be tomorrow. No one else to do it but our 17 year old son and I'm afraid he won't be careful enough about contamination.

I feel better about things just knowing he will fully recover. Definitely a bump in the road, but not as bad as it could have been.