May 2013 surgeries

Hi Cheri, I am scheduled for BMX with TEs for May 8th. I was DX on March 22nd with IDC. I wish it were sooner. I'd love to get this behind me. I'm getting a little anxious now.



Denise-G, Do you think that six weeks after dx is too long to wait for surgery? My husband is a nervous wreck. He thinks it is way too long to wait.

ChinneyMae - re: 6 weeks from diagnosis to surgery - that is what mine was about 5 1/2 weeks.  I got a call from my Breast Surgeon a few days after diagnosis that she had a cancellation and could do it right away.  I started crying and carrying on and said I was not ready emotionally.  She told me that we could wait because they treat the whole person and not just the tumor.  She said it will be okay waiting.  I found that I was far better prepared having some time.  Everyone around me was like "why don't they get it out of there?"  

Run4Us - I had 14 nodes removed.  I was sore under my arm, but it all healed well and relatively quickly.  I felt far better than I ever thought I would.  I did end up with Lymphedema but not until after Radiation.  Honestly, the easiest part of the journey was the surgery for me.  Everyone is different.  I had never had surgery for anything except a tooth before, so I was terrified.  But I did really well and I was 56 at the time.

Run4Us - My Lymphedema (LE) doesn't cause me must pain.  I have a great Lymphedema specialist.  I would HIGHLY recommend that you find a Lymphedema Specialist and go to a class because since you will be at risk for LE, you need good information.  Many hospitals don't have really good therapists.  Even if you have to drive miles to find one, it is worth it so you get correct info!  

It is a great inconvenience, but I'm getting used to it.  Try not to be too worried about it yet.  Just don't do any heavy lifting or repetitive motion stuff with that arm...

Hi, I am scheduled for BMX  with TE on May 10.  I am starting to get nervous as the date approaches and it becomes more real.  I have been thinking about whether to rent a recliner and/or hospital bed but am unsure if I will need it.  Am worried about how to keep my dogs off me while I sleep.  They like to snuggle and unlike my 6 year old, who I can talk to about my situation, they are harder to deal with.  

Do most peole get a visiting nurse when home (to look at drains or other things?)

Barb

Hello - even tho everyone's situation is different, there are something's that do not change, just the length of time. I had my BMW and TE's Oct.10, 2012. It was all new to me and a little scary but I made it through, had my exchange surgery Feb. 19, 2013 and can now speak with some knowledge that might help all of you who are facing a similar surgery.



I woke up from my 5 hour surgery with very little pain. The TE's were tight but pain free. All your nerves are asleep and take weeks to wake back up. You will have drainage tubes which, to me, were the worst part of the whole deal. I had a lot of fluid retention so I had the tube on the left in for 5 weeks. The tube on the right side was in for 6 weeks. That is a long time and not the norm. It is easy to take care of the drainage tubes and stripping the lines yourself. You have to register the amounts and when it is less than 15 cc's (I think that was the amount but your PS will tell you) a day they will be removed.

That was a great day.



After a couple weeks of healing your PS will begin filling your expanders. Saline solution is injected into a port on the top of the expanders. It's an interesting process how he finds the exact spot the needle has to go in. You do not feel a thing because your nerves are still asleep. Each week you get another fill until you are the size you desire. They get very tight and very hard. I took a muscle relaxer the first two days after a fill. Your PS will give you a prescription. By the time you have your last fill you will be quite uncomfortable but remember, it is only temporary. Then there is a waiting period so your pec muscles can totally relax before the exchange. My process took almost 5 months and I had 7 fills. I hear that is pretty quick. It's quite manageable so don't be afraid of it. I went about my daily life as usual.



For me, sleeping in a recliner was the only way to go. Being slightly elevated was the most comfortable position as the expanders got tighter. I can't imagine laying perfectly flat. I stayed in my chair from the time I left the hospital after my BMX until the exchange surgery. My PS and BS said, "Short term pain for long term gain." Easy for them so say, right?



I have had my silicone implants in for two months. There is lots of healing and still some discomfort as my body adjusts to them. They look great and I have an appointment with my PS in a week to discuss the nipple reconstruction process. Have not decided whether I am going to do it.



Be patient and prepare for a long journey. My whole process will be a year before I am through. I hope I have helped answer some of your questions and relieved your mind a bit. Prepare yourself for an emotional roller coaster throughout the process. It is hormone dependent tissue that is being removed so it will take a few months for them to stabilize. It didn't affect me until about 4 months into my journey and then I could cry at the drop of a hat. Everyone is different and some it affects at the beginning. I hear that everyone goes through it sometime in there journey. It passes in time and you will get your MOJO back.



Don't be afraid. Everyone is there to help. Your BS, PS, nurses and all your sisters in the same bc journey. You are strong and will do fine. I pray for each and every one of you. If I did not answer all your concerns, please ask me your questions and I will try and answer them as best as I can. I hope I did not rattle on too long.



Your sister who is now cancer free, Suzanne

Cheri1859 You've come to the right place, sooo much great advice/experience on this board from some amazing women!

As far as sleeping post op I found that having an assortment of pillows of different size and density worked best for me. I found that as I healed my pain and support needs shifted . So I liked the flexibility of being able to move pillows under my knees, arm, neck etc. There is barely room for my husband in our kingsize bed!



So sorry that you find yourself on this journey . Best of luck with your classes and with your upcoming surgery.



Leah

Hi Cheri ... My PBM one step with silicone implants is scheduled for May 7th. I'm so anxious, I think mostly because of the unknown ... how much pain will I be in ... when will I be able to raise my arms, take a shower, get dressed, go back to work ... what will I look like ... and OMG, I didn't even think about hormonal issues ...ugh! Just ready to get this done so I can stop thinking about it!  I have a recliner and from all that I've read it's going to be my "bed" for several weeks.  But I also treated myself to a Bed Lounger ... looking forward to my little present to myself : ) The tips from everyone here have been life saving. Thank you Thank you Thank you!!!

My thoughts will be with everyone!!

Hello everyone. I am so glad I found this forum. Things are moving so fast. My BMX is scheduled for May 7th. I went to the physical therapist today and I think that scared me worse then anything else so far, her telling me all about the lymph edema sorry I know that's spelled wrong, I've just been trying to keep busy and don't really like to be alone too much because my mind tries to play the "what if" game with me. I have my faith and I know that God has this under control! I am so blessed with great children and grand children, and a wonderful husband, way too much life yet to live. I have kept this all pretty private because I live in a small town in Texas, and the most well meaning people can say things that honestly bother me like "I'm SO sorry!" I realize they mean well but I always have to say its not the end of the world,. And I guess I'm kind of venting here, but I've decided I do not want reconstruction, matter of fact that was one of the first things I knew for certain, there are so many people that just don't understand my feelings. Yes I'm sure I will have to mourn the loss of my breasts, but they are not who I am, I'm more concerned with being alive and healthy! Anyone else understand my feelings?

Good evening everyone:



After much pre-op testing, etc., I am now scheduled for BMX w/reconstruction on May 20...cannot explain how thrilled to finally have a surgery date after my March 19 DX. Feel fairly healthy and all, but my BS gave me a little scare today. She said that although no current lymph nodes can be detected and a sentinel node biopsy would be done, if there were any nodes involved (1 or 2) she would remove all from that area.



Should I get a second opinion on whether this is necessary? Should I be concerned? It is frustrating waiting and I too feel like the delay in surgery is allowing things to be spreading around like little sperms. : )



I would genuinely appreciate some feedback.



Good luck to all enduring upcoming surgery.

Laurie1983, I am also having my BMX on May 7 ! Also with no recon. We also share something in common, no recon was a certainty for me even before my tumour recurrence. It's funny, there's an intuition or something that says very loud and clear, with no doubt, that it's not for me. I have some auto-immune issues so there's a possibility my body wouldn't accept the implants anyway, and I don't want to take any chances. 

About other people's reactions, I find people around me react with so much sadness and sympathy, that I find myself consoling THEM ! I end us saying something like: "I'm not upset, in fact, I'm glad my cancer is low grade and I have a second chance to have it removed, it could be worse." Kind of ridiculous isn't it? Having to reassure all the people around you that you are doing ok? On some level I appreciate concern and empathy, but on another level I can't deal with anyone else's emotions at this time. I can only deal with my own. 

I too will mourn the loss of my breasts. I'm 43, was first diagnosed at 40. I 'liked' my breasts. But I'd rather have peace of mind from what seemed to be too many mammograms, ultrasounds, core biopsies, daily self exams, etc. The constant worry of recurrence was too much. Especially since mammograms don't work for me as I have dense breasts. I found both of my tumours myself. I'll be relieved to not have this pressure. So, there's a sacrifice, but also a gain, which I will gladly accept and move forward with. 

Run4Us: best of luck on Thursday ! Have you seen the lymphedema website? Joann Rovig is a breast cancer survivor and massage therapist. She's put together some great educational videos on lymphedema and manual lymph drainage. You'd never say she suffered from lymphedema but she's managed to keep it under control by doing manual techniques to reroute lymph channels, which she shares on the site. Very inspirational.

http://www.nwlymphedemacenter.org/vid_mngmntA.php

Positive thoughts and prayers for all of our May surgeries -- may we all be blessed. 

Bamboogirl, Thanks for the info regarding the lymphedema website... I'm going to watch it right now!!! 

Ann... I LOVE the name of the party your girlfriends are giving you... I laughed and laughed, it was just what I needed to hear!! Thursday is only four short days away for me... and although I'm nervous I also know that my surgery day brings me living life cancer free!!! My thoughts and prayers will be with each of you.

DeniseG, I'm sorry I haven't been on lately. I've been trying to get my work caught up before I go out and it's been really hectic. Thanks for the post. It makes me feel better knowing that waiting that long isn't going to make that much difference. I'm still a little nervous as May 8th approaches.



Suzanne, thank you for your post. It has eased a lot of my concerns. I have a recliner and a friend has offered to let me use her hospital bed. My DH has been so helpful.



Thanks everyone for the posts. All the advice has been so helpful.

Ladies.. Please add some extra prayers for me.  Yesterday afternoon I started with the flu... vomiting has stopped but still have a low grade fever. My BMX is scheduled for Thursday and I need to be fever free 24 hours before surgery inorder for them not to reschedule.  I have prepared myself mentally for this surgery and I don't want to have to reschedule. Please send good thoughts...

I will keep you posted and will come back after my surgery to let you know how I am doing!!

Moderators... thanks for the great info!!

Lisa, I am praying for you right now. Ann

Lisa you are and will continue to be in my prayers for quick healing and for surgery on Thurs. I may have to postpone my surgery at the end of the month and have been battling disappointment. Praying you get to go thru on Thurs!



To all the ladies with upcoming surgeries: my thoughts and prayers are with each one of you! It is oddly comforting to know that all across the country other women are going thru the same roller coaster of emotions and surgical concerns. Even though we can't link arms, we can link our hearts.



TY to the moderators for the great info!



Leah