August 2010 Mastectomy

lago, I only know that my onco recommended tamoxifen or arimidex (not  sure what arimidex is) because I have hormone receptors. I'm still new at the meds game yet until  I see my onco on sept 30th. Not sure what the grade of my  tumor is either. So I need to know that, too.  I'm sure there probably isn't anything to worry about. Just can't help it. I'll have to look up aromatase inhibitors. Thx...

Hang in there Janet! I know the roller coaster ride too well. One step at a time. I know just now nervous I was before surgery. It's a different view from over here (after surgery). Wishing you the best!

OMG crazy stuff @ John Hopkins. How horrible. Thank goodness you got out of there and the doctor is expected to survive.

Paula1232

 There is a website oncotypedx.com that has a lot of info on the OncoDx.  One of the links under "patients and caregivers" has a section on patient stories that shows the wide variety of tumor pathology and how the test helps make decisions about chemo.  Also, there is more detailed information under the "health care professional" link.  I have two more weeks before my results come in.  I don't know if you saw my previous post, but my onc was more concerned about the biologic gene activity than size.  I am also 2.5 cm. I send you good thoughts for Monday. 

I have a question about the elephant sitting on your chest-- I won't start the fill-up process for another week-- and the skin over the TE feels like it's sunburned-- really sensitive.  Does the TE somehow drop down-- right now it is so high on my chest and close over my breast bone. Can the TE become swollen even before a fill--it feels like my TE is larger or perhaps just shifted its position??   No second guessing here, but I sometimes wonder if it would have been better to have a DIEP -- longer surgery and recovery time, but then your done!  Oh well, can't look back, only forward, right!

JanetinVirginia   One of the hardest things about what we are all going through is the waiting-- the waiting for mammogram results, the waiting for biopsy results, the waiting for lymph node results, the waiting for oncogene studies.  The counselor at the Breast Health Center in SF said to try and keep occupied, busy, distracted (much easier said than done, for sure).  That's when friends, family, funny movies, walks in the park, meditation --whatever it takes to keep our minds from overdrive--helps.  When the results come in, somehow you find a strength to get through--to do what you have to do to be well.  When the final pathology report came in I actually had two sentinel nodes that lit up from the dye and a third node removed.  I found out that the nodes are in clusters (like grapes) and that the third node just was attached so that came along.

This truly is a one step at a time, one day at a time way to get through, but look at all us August Ladies--we were all exactly where you are not so long ago-- and we made it -- tears, anxiety, fear--but we're still here and we're going to be here a long, long, long time!  Good thoughts for you for your surgery!

 sunnybluesky: My TE are also high and wide. Remember they are there to stretch the skin. They are not the final shape. I do hear they can move out of position. Be sure to check with your PS if you really feel this is happening. I do have sunburn feeling in my arm pits but not so much on my chest. It's still somewhat numb there.

I did have swelling all around my upper torso. I felt a bit deformed for a while but this week my body swelling seems to be going down. I had my first fill on Wednesday (2 weeks out) and my next, next Wednesday. My PS likes to fill slowly. My skin is very tight too. That's the only way they will be able to stretch it.

Robin: My steri strips came off on Wednesday too. I too have some really long scars that go all the way under my arms (because of lymph node level I and sentinel biopsy). I figured it would be that way. I'm a rather small person on top and I know they need an insion large enough for those male surgeon hands to get in there.

Just happy my surgeons weren't former basketball players with huge hands ;-) Seriously scars get lighter and ligher over time. My mother had her a thyoid opperation years ago. They made an insion right across her neck. That was 25 years ago. I don't think there is anything there. Can't even remember the last time I saw something.

Exercise links:
http://www.cancer.org/Cancer/BreastCancer/MoreInformation/exercises-after-breast-surgery
http://www.cancer.sutterhealth.org/information/bc_notebook/postoperative_care.html

Guide:
http://www.sunflowerwellness.org/Book/Chap8bBrCaExerciseRecommendations.php

Lymphedemia Exercise:
http://www.imaginis.com/breast-health/lymphedema-2

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Of course no OncoDx for me. HER2+ at my stage always gets chemo with herceptin highy recommended. Even without the HER2+ factor chemo statistically increases my survival chances. Here was the break down I was given is below. Pretty close to what the http://www.lifemath.net/cancer/ said. What the stats below doesn't consider is Herceptin. I don't think there are enough studies to know but I hear it works for about 50% of us:

No additional therapy
40% alive in 10 years

With Hormone therapy
additional 26% alive in 10 years

With Chemo therapy
additional 28% alive in 10 years

With both Chemo and Hormone therapy
additional 44% alive in 10 years

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

1 more thing. My PS is sending me to physical therapy. I'm really glad about that. I don't feel my range of motion is improving fast enough.

Nancy - The incident at Johns Hopkins is so tragic and sad. I am glad you were not there when it happened and also glad it didn't get worse than it did. Jealous that you are done with your fills and sorry you have to wait so long. Maybe they will have a cancellation that will open up a spot for you :-) or maybe if you complain enough, the PS will do it earlier to get you to stop

I am six weeks out and I had my second fill this week on Tuesday. I had my first fill at five weeks post-BMX. The first fill was easy for me. Almost no discomfort. This second fill has not been so easy. I now understand the "two bricks tied to your chest" analogy. The plus side is that as the TEs get fuller, you can sleep on your side!!! This is my second nite sleeping on my side. What a difference. Not perfectly comfortable but I'll take it anyway!

Sunny - I felt the worse before the fills started. I was small before surgery so I think I have alot of skin that needs stretching since my cancer was in my nipple and they removed alot of skin. But before the fills started, I could feel every single seam in the TEs, especially in the evening when your body is tired.  It feels better when they start filling since the seams of the TE start to flatten out. Also, my PS told me that once you are further into the expansion process, it's not unusual for them to start migrating under your arms. But I would definitely check with your PS.

Glad to hear everyone is healing nicely!

 ~Smurfie

hey everyone glad to hear all the TE stories. I ahd a bilateral 5 weeks ago with no reonconstruction. Doctor said there is a chance I wont need the TE and can go right to implants but wont know until I am completely healed.

 Good luck to those waiting for oncotype scores. Size of the tumor does not factor into the test score but some doctors opt for chemo based on size. Mine was only 1.2 cm but my score was 31. I will be starting chemo on October 5th. 4 treatments of TC 3 weeks apart. The when my immunity is back up I can start reconstruction. 

Carrol sorry to hear you're needing chemo. So many of you are needing it. I feel guilty because I am not likely to need it. I learned more about my cancer today. I am HER2- and the grade is either 1 or 2 but not sure.

Well I am 18 days out and not only am I topless, but I am officially tubeless! No more drains! I worked out today. I used just the recumbant machine and the treadmill. I like the hill profiles. I feel strong and motivated. And I feel much more normal and more free since the drains were removed. I did get a little booklet on exercises from my BS but haven't looked at it yet. Well I'm off to get a really nice hot shower. I was afraid to take one before for fear I'd lose more drains as the two on the left fell out.

JANET I did not need a nurse when I got home. My sister came and stayed with me the fist week but that was more for moral support. I was able to get up and do everything myself. I guess if you live alone it would be good to have someone with you until you see how you are. When I was in the hospital it never took more than a few minutes for a nurse to come when  I called. They came pretty often to take vitals anyway. At home i emptied my own drains, took showers with them and everything. I had plenty of button down clothes and pajamas ready.

 winterstorm glad to hear your drains are out. I bet you will really enjoy that shower.

I did not have a nurse.  I was able to get around and my DH took off a week to be with me.  I slept on a lazyboy and he slept on the couch.  DH did my drains the first couple of days and I took over from there.  My PS would not let me shower till all drains were out. 

Carrol2, how did they decide on how many chemo treatments to do?  Nice to know size does not matter..

I don't know if y'all were given the exercise booklet. But I just found it on cancer.org. If you already have this, please disregard. I hope it helps.

Exercises after Breast Surgery

JanetinVirginia 

The first night in the hospital after surgery, my DH stayed in the room with me.  There was a chair that pulled out into a bed and they gave him a sheet, a blanket and a pillow--I looked over and he had stripped down to his boxer shorts!  He had a wonderful nights sleep--seriously--it was really nice having someone close by, although I did not really need his help, just his snoring made me feel right at home. 

The nurses were great--they came as soon as I rang--which was to go to the bathroom.  I had to pee a lot!  They had to unhook me from the IV and make sure I was steady.  I have to say, I was doing quite well pain wise.  The PS inserted a tiny catheter by the incision during surgery that had a sensor on it that delivered a small amount of a local Novocaine-like drug intermittently for about 24 hours-- it's called ON-Q.  I think that must have been really effective, because I only needed a percoset every ten hours or so and I never needed the morphine pump that the patient controls .  The nurses checked on me a lot to see if I needed anything for pain--they don't want you to wait until the pain is too much--they want you to keep ahead of the pain.  Also, if the pain is under control, you can walk a lot easier which is good for you. 

I came back to my room at 6 PM  and ate a full dinner at 6:30!  I stayed two nights and felt ready to go home.  My DH stayed with me at home, telecommuting.  He did the cooking, fed the bird, the dog, the bunny and me.  I did not have a nurse, but I only had a single MX so could use my other arm.  I had friends come by with food and for short visits.  I took a siesta every day for two hours and it is something that I will never give up! 

A friend gave me a relaxation tape specifically for someone having surgery--that REALLY helped--both before and after-- it put me in a very calm state.  If you can find a relaxation CD (ask your doctor or nurse or check online) and put it on an MP3 player--start listening every day--and also after surgery and anytime you need to sleep, unwind and float on a cloud.  Let us know how you are doing.

I was told not to do exercises at first. I was given a few once my drains were out a week after surgery. Then a few more 2 days after that. Never got the booklet.

My left side isn't doing as well as my right so now I need physical therapy (starts Tuesday). I'm actually happy about that. I was not pleased with my progress. The nurse said I was doing great at my last appointment but then the PS saw me and felt I needed physical therapy. It seems the PS and I have always been on the same page.

Winterstorm: thanks. I had that link too.Here are a few others:
scroll down for exercises
http://www.cancer.sutterhealth.org/information/bc_notebook/postoperative_care.html

guide
http://www.sunflowerwellness.org/Book/Chap8bBrCaExerciseRecommendations.php

lymphedema exercises
http://www.imaginis.com/breast-health/lymphedema-2

Janet I did the drains myself no problem and I had them on both sides. They hung down about 18 inches I kept them in a pouch in a special camisole called a "softee" to keep them from dangling. Having the dinners ready is a great idea. Having your son there will be good to answer the phone, cook meals, shop, clean the house. You will be able to take care of yourself pretty well but housework will have to wait a few weeks. By week three I could cook and clean for myself but I let my husband do a lot of stuff.

Sorry Carole to hear. I haven't had those issues but hang in there. They will figure it out. From what I have read most of us will have a few complications with recontruction. They work it out.