March 2012 chemo

I did the BMX and have never regretted it. Of course, it's different for everyone. I mean, I know logically that the outcome numbers are close to the same for BMX and lumpectomy with rads, but I would always feel like I didn't do everything I could. Dumb, I know, but it's just me. I still can't even bring myself to think about reconstruction. I've tried. I just can't. I just feel like dealing with more than one scan/test/treatment at a time is too overwhelming for me. So, for the moment, I can only think about the upcoming scan and starting Tamoxifen. Maybe once that is over, I can think about reconstruction.

Re: rib pain. I'm sorry your ribs still hurt, kltb, but it actually gives a little bit of comfort to know that other ladies on here are dealing with the same issue and it's not mets.

Anyway, I restate my original position: CANCER SUX!!!!!

Lana I know it makes you uncomfortable but the lady who organized the meals for me when I started chemo told me that people WANT to help. They are doing it not only to help you but because when you help someone it makes you feel good too.  So let them...I know it can be really awkward but if they want to do this, let them!

Here is my update - cut/pasted from another board so I hope it makes sense:

 Oh. my. gosh.  So tired of the runaround.  Called the BS office back - the receptionist said no they hadn't heard from PS.  Called PS office back - the scheduler/patient liason said YES PS had called.  Got to talk to PS again.  He tells me well, your BS really doesn't think you need radiation.  She was going to pull the RO report and call you.  I was like, um, yeah I DO need radiation and here's why.  He didn't particularly care, lol.

So I proceeded to question him again and he did explain that implants are still an option but it it can be done with the latissumus dorsi flap.  Which I am sure someone told me yesterday but I was too distraught to listen...sooooo.....

Called BS back again and spoke with the slightly grumpy secretary (not really but she isn't warm and fuzzy).  She told me that she would speak with BS today and have her give me a call back but that "the clinic is quite busy today" - um, yeah, whatevs, I need to know if I am having surgery in 20 days as planned.

So now I get to defend my radiation decision to her.

Ok, to summarize...in the last 72 hours we have gone from having a BMX with TE's and rads to having a BMX/delaying resonstruction, to having a BMX with TE's and maybe no rads.

BS called RO.  Who is brand new and is fresh out of school.  This is his first year to practice.  She said after talking to him, she just felt like he was jumping the gun.  She wants me to go ahead and wait on the final pathology and get another consult.  I started quoting my articles at her and she still feels with my position of the tumor (3 cm and not close to chest wall in a D cup) that chest wall isn't an issue and that even though I had the one node, the amount of cancer in it and the fact that there was only 1 of 6, etc... my age - well, I am 39, which *IS* under 40 but is really different than if I were 32.

 So...I am back to square one.  Even if I do have rads, the TE's will be in there so I guess we will cross that bridge when we come to it.  I won't be getting the rads consult until after surgery so we can wait on final path. 

Of all my drs, I trust my BS the most - she is young and current on research, yet experienced (about 16 years of practice) and like I said on another board - she doesn't really have a "dog in this fight" - I can see RO recommending rads, I can see PS NOT recommending them.  So I do value her input. 

But I will continue my research so when I do have the second consult I can be prepared to discuss the issue in depth.

Hi all! Haven't posted in a while so it took a bit of reading to catch up on everyone. I'm having my BMX on the 26th with delayed reconstruction. My PS told me to wait till after rads to do reconstruction. He said you get better results with nothing there to block the rads. He said he would do it if I wanted to, but if it was his wife he would tell her to wait. So I will wait 3 months then I'm going in for the DIEP surgery.



Lana-people just want to feel that they're helping in some way. And they will only give what they can, they won't strap themselves or their family. I think it's wonderful that you touched so many lives that they want to do this for you.



Kltb- I think it's awesome how you research and defend yourself so well. Do whatever you feel is going to give you piece of mind with this crap. My Mo's assistant was very upset that I was having a BMX. She kept telling me I was removing a healthy body part. I finally told her if she could guarantee me that it would stay healthy I wouldn't remove it. She shut up after that. My MO agreed if it would bring me piece of mind.



Alice- you're such an inspiration! I love reading your posts. Have a drink for me when you pop over to another country!



I'm starting to get nervous about surgery. Glad to see so many people say its not that bad. I'm just having a hard time at the thought of no breasts for about 5 months. Didn't see that coming at the age of 44!

Kltb...I got a surgical camisol that has drain pockets that was covered by my insurance.  It zips up the front and has the stuffies you can insert on either side or both sides.  I used the stuffies in regular bras until I was fitted for a prothesis.  You can remove or add stuffing to them to make them the appropriate size.  The drains also fit nicely into the removable pouch.  I haven't had TE's put in yet but when I do I will use those stuffies again and change the size as needed.  Not sure if they have the store 'La Vie En Rose' in the US but they have nice mastectomy bras that have removable inserts...and the inserts are based on cup size.  They are gel filled so you can't change the size of them but they are super comfy.  My insurance company covered that receipt as well.

I had a camisole to hold the drain bulbs - covered by insurance. I probably spent half my time in the recliner and half in the bed. The best thing I think I had was a couple of small pillows to go under my arms between my arm and side. I don't know why those made such a difference, but they did. I had no trouble at all getting up and down. It was a little hard to get comfortable since I couldn't sleep on my sides or stomach, but other than that, I didn't have any major discomfort. I know it's gonna sound strange, but the port placement was more uncomfortable than the BMX for me.

Hi KTLB and Lana

I have been following your posts re rads, reconstruction and tissue expanders or not doing anything at all at the moment...and can relate to both these points of view.

In the hospital I'm being treated at in the UK, reconstruction is only offered six months after doing rads at the earliest and the docs prefer people to wait a year for recovery and healing.

After that it's the lattissimus dorsi procedure (skin from the back and muscle used to make a new breast) because they say irradiated skin does not have the elasticity for implants. The procedure can take a few weeks/months to heal from.

I've decided not to have reconstruction for two or three years because I want to use my energy to fight if my HER2+ comes back.

Don't think DIEP sounds right for me either...so it's one boob, one love for me at the moment!

Can totally relate to Lana not wanting to do anything re reconstruction at the moment. Hope you will make the right decision for you KTLB.

Best wishes

Alice

I remember the first time's were hard...first time draining the drains, first time taking a shower with the drains, first time pinning the drains to a ribbon around my neck to take a shower....the second time was easy.  The first shower feels so good...I know I waited about 4 days after surgery.  If you have any or can still find them, the Target Momissmo tank tops are great.  They are stretchy enough to hold the drains up and against your body. This time of year they may be getting fall/winter clothes in....the long sleeve version maybe?

I found the SNB incision difficult, so if you are having lymph node removal, that might complicate sleeping positions. 

Definitely something button up or zipper up. I had my surgery in January so I just wore zipper up hoodies over my camisole. I slept on the couch for a week surrounded by pillows. My husband washed my hair for me in the sink for about 10 days...then I was able to lift my arm up enough to do it myself. He got pretty good at the pony tails! I did have quick showers and just tied the drain to a string.

Well done Indigo for fininish chemo!

Congratulations. It is a great day!

Mine finished a month ago and I am feeling much better - about fifty percent like my old self.

Hope you are feeling fab.

Best wishes

Alice the Cat

Indigo! Congratulations on your last chemo DONE! what a feeling... Though you will definitely appreciate it more once you get through to the upswing...wow.

KCB - both of mine did that too.  I tried to let them hang on as long as possible through sandal weather, but they had other plans...I gently tugged & they just came right off - no pain.  To my surprise, there were already new nails growing in underneath & covered about 1/3 of my nailbeds.  They're slow growing of course, but are looking very healthy now at 18 wks PFC.   Also lost both my baby toe nails - same deal.  

 It was still hot summer weather, so I just covered my big nail tips with a nude coloured fabric bandage cut in half lengthwise & no one even noticed, it blended in so well.  

 My finger nailbeds went dark purple & looked threatening for a while, but held on tight.  I can still see a definite line where the chemo affected parts are growing out - now halfway up.  I only had AC too - no taxanes. 

Good afternoon ladies - just checking in to see how everyone is doing.

 Just back from a long beach weekend in Tampa to celebrate the end of my treatment.  I must say it was wonderful even if there was a bit of rain!  I just love the ocean and I find it so calming, just makes me smile thinking about it.

I am FINALLY getting some energy back and even started my workouts again (though SLOWLY).

Hope every one is doing ok! 

Yay Indigo! Congrats on finishing!

Onvacation: huge congratulations on being all done! That must be amazing. I'm 7 rads away (+5yrs Tamoxifen of course) from being finished, and it seems unbelievable.