December 2014 Surgery Sisters

Knmtwins, that nurse is crazy. I heard some really wacky things from nurses in the past. They don't all know what they are talking about. Sounds like you have a seroma for sure. As long as your body starts to absorb the fluid it's not a problem - you can get is drained by the doctor. But keep an eye on your temp. Low grade fevers are an early sign of trouble as is color changes on your skin. I do agree that fills need to be set aside until you get the seroma taken care of.

Once in awhile someone mentions their doctors recommend massage but I think I went a year before I heard of anyone doing it. Some types of implants are meant to adhere to your tissue, so massage is not indicated. I've had both Allergan Style 20 rounds and 410 FF gummy bears, and massage is not part of recovery for those. I have read that some PS recommend massaging the scars, however. My PS does not feel this is necessary but maybe it is for certain people who tend to have problems with healing. I don't know.

Bippy, I know just how you feel. I was incensed yesterday when a new nurse at onco asked why my scripts had changed since Nov. I.e. pain meds. When I said I had surgery she was like "You did?" Umm yes a BMx. She looked surprised. What the frack?

I guess I better get ready for all the questions and comments when I go back to work in a week. Ugg.

Happy New Year from a very slow treadmill at the gym.

Scottie

quiggy. What a trying day. It is never over, and all is so magnified now with our own illness. Hope you had some rest.

KNM! Yup, i am on perjeta and herceptin till July. Onc says I can have it, since I was on it pre surgery. Had it once already, no SE! You should have none with herceptin either. I can say as to bills and work---I found a foundation in my area that has already paid 1500 of my uncovered medicals. Search for those, ask, find them and apply. Why go into financial ruin for getting sick! Some are also non need based, those are the best ones with least paperwork. I am working on one tha will pay my mortgage for up to a year right now, funded by the feds

Working will differ for me too, but contact your local unemployment office, or womens resource center. I learned there are FREE tuitions, training, etc. of unreal proportions available. Medical is huge (hahahahahahahaha), we all have seen that, and you as a "displaced homemaker" qualify for tons! Let them call you whatever, if it gets you help you deserve.

I am a paralegal, had a great job, but will be freelancing till tx is completed. I hope to start right after rads. Hard adjustments, but necessary. I am not ready to go rightback to the grind full time.

My squishies! Well, maybe today I will go, but more likely tomorrow. I will,continue to share all, it is so therapeutic. Off to tx, see you soon.

Happy New Year everyone!

knmtwins - My TE's are only a little bit in my armpits but I do feel like I have an ill-fitting under wire bra underneath my skin. They are hard and unforgiving and as much as I like sleeping on my side, I can no longer lie comfortably that way On the plus side, I had my first fill today, only 50 cc, and I'm not feeling any additional discomfort.

I was on perjeta for 6 treatments and will be on herceptin for a year as well. My onco stopped the herceptin when I finished chemo with the understanding I'd be starting back up after surgery. I'll be starting back on Jan 13 and will also be starting on Lupron and Aromasin. I know it's a means to an end but I'm not looking forward to it at all.

Ah ha! Pinkninja, you are now a believer. Sorry you (like so many including me) had to learn the hard way. Doing too much hurts you in many different ways, not the least of which is delayed healing. I know the newbies think I'm crazy when I pull out my soap box and climb on to preach, "Just because you CAN doesn't mean you should." It's too hard to believe that wiping down that one counter or going to the grocery store for just a few things can backfire, but they do. So I will continue to preach the theory of T-rex arms. Mentally glue your arms from shoulder to elbow to your side and don't reach out to the side, the front...just don't reach at all. Don't let your arms go above your shoulders. Don't massage anything or start exercising. Sit quietly or sleep and let your body recover. The rule of thumb, taught to me by one of my anesthesiologists, was to allow 1 week for every hour you were under general anesthesia.  

Bippy - wonderful description of what we are going through. We can all relate.

Scottie, people say the damndest things! Everytime I think I've heard it all, someone else tells a story that leaves me gobsmacked. Yes, you are right. Prepare yourself because it's coming. What finally helped me was to turn the question around. When it was particularly offensive or stupid I would say, "Why in the world would you ask something like that?" Don't wait around for an answer.

Kmn and Bippy, the idea of a counselor is a good one. It made all the difference in my life. I was referred to a behavioral therapist and saw her at least once a week for several months. She was not preachy or pushy. She listened, asked questions, and gently guided me into ways of coping based on my particular way of learning which is reading first then talking. PTSD is a fact for us. I was particularly hurt by the way my friends treated me. Some people I'd been close to for years just dropped out of sight right away. Others drifted away slowly. I was absolutely crushed, especially by the ones I'd stood by in their own times of need. The therapist helped me understand how people cope with not just their own illness, but how they deal with it with family and friends. Some absolutely cannot be around someone who is sick. They can't explain it. Others are there for you on the phone, but don't expect to see them in person. Even friends who are helpful at first can get "sympathy fatigue" and drift away like many of mine did. Only one of my 10 "besties" stepped up in surprising ways and she and her husband have become rocks upon which I've often leaned these two years. The others have all come back to me a little at a time. Thanks to my therapist, I don't hold a grudge and have welcomed them back with open arms knowing we all are doing the best we can. I don't expect more than they can give.

You should know that breast cancer was the third strike in 2013. I began the year with a moderate brain stem stroke in January, was soon diagnosed with a large aneurysm in the ascending aorta of my heart (same thing killed my grandfather & uncle), and just as I was beginning to get a handle on the new limitations of life, had the routine mammogram that led to the breast cancer diagnosis in July. As I said, some of my friends got "sympathy fatigue." I don't blame them.

Now that I've officially finished with reconstruction as of surgery #6 two weeks ago, I do feel a bit lost. There is no clear path to follow anymore. It's watch and wait for recurrence, or another stroke, or for my heart to explode or the cardiothoracic surgeon to say it's time for surgery. That's life from here on out and in it's way, that's just as unnerving as the events of the past two years.

FATIGUE - Boy that is an understatement I am 30 days out from BXM and 20 days out from second surgery for infection. I am exhausted and winded and swollen. Today I went to the eye dr for new glasses and took a friend to her dr appt. She cannot drive so after dr. appt we went food shopping for herself and a few items for me. I was out about 4 hours and when I came home, I hit the couch and fell asleep within minutes.

My underarm side boob is filled with fluid and very hard to get comfortable with clothes or moving around much. I started my hormone Therapy pill yesterday also.

Hoping my energy level improves over the next few weeks to begin thinking about going back to work.

Anyone else having major fatigue? Anyone have infection with open wound on breast?

3 weeks ago today was BMX. Am still exhausted. Fall asleep trying to read or watch TV. If I empty the dishwasher I rest. Everything is a big deal. More mentally tired than physically. DH and friends tell me I look amazing. Wish I felt amazing Didn't have infection but had HUGE hematoma so 2nd surgery the night after BMX so maybe the anesthesia did me in. The thought of going back to work is overwhelming. One day at a time

Sandra, you've certainly been through a lot would be a gross understatement! You must be a very strong woman on one hand to go through all that and very tired on the other hand. I will pray for you specifically.

You are so right about resting. I had to go to ps last week because my underarms and chest (sternum maybe) hurt so bad from me over doing it. It's only been a few days and although I still ran around a lot with my hubby, I rested and sat still a lot more and I do feel better. I keep waking up though at 2 am and I feel like my right boob (oops forgot, no more boob there) the te's or something is so painful. I'm fine most days and can keep the pain under control with either dilaudid or Vicodin and the Valium so I'm not sure why it's waking me up. Im gonna try to adjust the meds time so I'm taking the Valium and pain med right before I go to bed, that may help.

Scottie, I have been dying to take a nice long soak in the tub so maybe I'll do what you did, take a mini soak. I'm just worried about my skin getting even more dried out than it is. I am so itchy and I use baby oil after shower and Aveeno lotion on my body once the baby oil dries. I literally have a long wooden handled back scratcher right next to me at all times in case I need it!

I spent lots of time on the TE Trouble thread and can certainly recommend it even though my own experience with TE's was not miserable like many report. No fun, for sure, but do-able. Many of the women who come there just want to make sure that what they are feeling is normal - and 99% of it is. A few use the thread as a good place to vent and describe in detail how much pain they are in, which can scare newbies, so there is another similar thread for basic info on TE's without the doom and gloom. It's called TE's, a Beginners Primer.  

i go to Florida Cancer, and they are very cutting edge, so are using the perjeta now. No clinical trial, but I may be lookin into that too.

TEs scare the crap outta me. I am actually considering not doing them or implants.....not sure. Good to know not everyone suffers terribly! I did read the forum and it really has discouraged me. Maybe a flap? Hmmmm...

Waiting, cant answer that one, but hope it feels better soon! I am stil sore from surgery

I agree Ginger. I suspect some of the problem comes from not knowing what to expect with a tissue expander. I know that things I don't expect scare me and make the discomfort or pain involved seem much worse. If I know ahead of time, I can prepare. Additionally, some of what you feel are the same "zips, zots, zaps, burning, pins, needles, aches & ouches" that you have after all kinds of breast surgery. Not everything is because of the TE. Education is the key to the TE experience.

Another thing I suspect is that people have different tolerances for discomfort. Not that I'm an expert by any means, but it seems that what some people call pain, others call discomfort. We are used to popping a pill whenever we have the least little thing and living a life as "pain free" as possible. Nothing wrong with that, but I think it can backfire a bit when you have something that will not go away so easily. TE's can sometimes be manually pushed around to take pressure off of a nerve or quit irritating a rib. Changing your position and distracting yourself may be all it takes to take your mind off of it. Other times, no matter what you do, that TE is going to drive you crazy for a little while.

I had no discomfort at all in spite of very large fills. (180 cc's & 240 cc's were the first two.) As it got bigger and the skin & muscle were being stretched, I would feel fullness or tightness in the evening after a 100 cc or 80 cc fill. A couple of Tylenol and a good night's sleep took care of it and I was fine in the morning. This continued until I was at 680 cc's and went in for a little 60 cc fill. That night I suddenly found out what others were talking about. Ouch. OK, that was painful for two days. I wasn't writhing on the floor in pain (it wasn't THAT bad) or miserable enough to wish for the "hard stuff drugs" but the sensations were enough to make me decide I'd had enough. I cancelled the final fill and stopped at 740 cc's. During the next month while I waited for the exchange date, it was like you feel at the end of a pregnancy with a big swollen belly. Instead I had a big swollen stripper boob stuck to my chest. Prescription Lidocaine patches helped to calm the stretched skin, especially at the top where I had an actual shelf. I could balance a Solo cup on the shelf! No it was not fun but you have to keep your eye on the prize and not dwell on discomfort. It doesn't last long and it's NOT like you are miserable 24/7. Some people go through the whole thing with no discomfort at all.

I can't take any kind of pain pill or IV pain medication because I am truly allergic and have coded 4 times. So Tylenol is my only ally. Learning as much as I can about what's to come and what I can do to minimize pain gives me a sense of peace. Once fear of the unknown is gone, I feel better and can handle anything.

It doesn't always work, however. I'd rather have a baby than go to the dentist...even for a cleaning. I know...it's all in my head, but I just can't seem to get over it. After a cleaning, my teeth and gums throb for days and I'm miserable. During a filling, I spend more time up on the ceiling than in the chair! If I have a cavity, I put it off until the last minute and then take a valium before I go. So, I'm not in a position to judge anyone else - especially about how they perceive pain.

Hello all! I am new and trying to learn about treatment after bilateral mastectomy. I see my oncologist this coming Wednesday, Jan 7th. I had bilateral mastectomy done Dec 18, with expanders for future reconstruction. Started out with 3 drains, now 2 JP drains still in. Invasive ductal carcinoma with 13 mm tumor. Grade 3. With DCIS in large ducts. I had lymph node involvement. 10 nodes taken, 1 sentinal node was positive for metastatic cancer. Staging pT1c, pN1a. Wondering of anyone has a similar diagnosis and what treatment you had. My surgeon says radiation and chemo are very possible.