Calling all TNs

Julie - so glad you like your center. Have fun shopping!

Well now Titan you are wrong for once!!   Yep we have labour day off but its not until October.  Isn't that funny that its not the same everywhere.  Our mother and father days are different to you aswell.   This Sunday is fathers  day in NZ and the old feller reckons he's going to get some special treatment.  Yea right. Oh ok his favourite meat is pork so I might make him a pork roast on Sunday.  We also have Christmas before you,  so there Titan.  I will get my pressies before you lol.   Gisborne a town in NZ is the first town in the world to see sun up. So another feather in our cap.  Don't you just wish you lived here girl (I wish you did) You could have a martina and I'll have a fag.     

Wishing all you girls and (AL husbands wife) on active treatment all the very best.  I've been taking a break which has done me good.  Now have my second cold in  two months so must be a bit run down or my immunity is compromised.  Oh well, I'm still here annoying our athlete Titan.  Don't forget Titan need you here by 6th March 2014 for the Ironman.  Flag is all but ready for flying.          

Hi, 

I was diagnosed at 36, have had a mastectomy and trans flap reconstruction, having chemo number 4 next week - what a struggle that's been.  Have a 6 and 4 year old.

Have been struggling with the TN diagnoses this week, don't know why it hadn't bothered me up to now.  I keep freaking out about getting to 5 years without a reocurrance, maybe because I had 2 tumors..

Arghh.

Julie - Thanks for your information about your cancer center.  I hope I never have to use more ca doctors.  Enjoy the weekend with lots of family and friends gathering around you.  J

Angstepp: Try not to worry. I too had two tumours (2.5 cm and 1.5 cm)... doing fine (touch wood) 4 years later. 

wocka wocka wocka Tif J...that is fantastic news!  3 yrs is HUGE...so happy for you and your family.

OBXK enjoy your weekend away with your little darling.  Why do they grow up so fast?

Have a great weekend everyone. 

Maggie

Hey girlies and husband ~



I read your posts every day and am so encouraged by the friendships and information on this site. I've written to several of you privately and am so thankful for your encouragement and hope.



I haven't posted public in awhile ~ was busy trying not to think about BC and dealing with my recovery from reconstruction surgery in latter part of May. (took out expanders and put in implants)



2 weeks ago today I had to have my radiated breast implant taken out due to the tissue not healing and the breast retaining fluid. Radiation had hurt the vascular support needed. BUMMED. Since I had a double MX with expanders (Sept 2012) and radiation all done and finished by last December I was hoping the healing would be enough for the implants to "take" and I wouldn't have to go through any more surgeries. Now I have one good breast and one caved in gnarly looking one! 😣



My husband calls them Pancho and Lefty and says "Pancho ran off and left Lefty"! So now to decide whether to do the DIEP flap or the latissimus (back) flap OR just forget it and wear a prothesis. Any stories out there that you girls can offer me to help decide would be appreciated.



I am so glad I found this site and ALL YOU COURAGEOUS LADIES AND HUSBAND!



Hugs, gwen

Hi Gwenie....be sure to research about lat flap and increased risk of lymphedema.  I chose diep flap through the Center for Breast Reconstruction and St Charles Surgical hospital in New Orleans.  That is all those doctors do these is rebuild women who have endured BC or are at risk for BC  They work with you if you are out of network with your insurance.  They really are experts in the field. There is also a hope lodge nearby that you can stay at free while recovering after surgery.  A good option to look into if you still want to go for recon.  These are tough choices to make both emotionally, physically and financially.  just look into all the options before making the decision.  Wishing you all the best

Maggie

Hi Ladies!  Do you have room for another TN?  I've been posting mostly in the starting chemo July 2013 thread.  But would like to post here too.

I'm 46.  Diagnosed with BC .  Found lump in right breast myself while on vacation but didn't think it was anything to worry about since it was time to start my period and it hurt.   But made the appointment when I got home, which sent me through many more test.  Finally a biospy on June 24.  BC confirmed the following day.  Two masses 2.5 cm at 9oclcok in right breast.  Just enought tissue between them to call them two masses and not one big one...don't think that really makes much difference.

Spoke to bs on July 2nd.  He recommended chemo first for TN.  Was really disppointed, I wanted that darn thing out yesterday.  But folllowed his recommendations, had the port put in  and met with a MO.  MO recommened AC/T protocol.  Which scared the hell out of me.  Reading all the horror stories about the red devil...yikes!  Had my first chemo on July 19th.  To my surprise, very mininmal side effects.  No nauesa, aches, pains...did have a horrible bout of constipation, but the MO "fixed" it, no problem since.  I just finished my last red devil yesterday!  I'm really encourged because  before my 3rd treatment, BS did an ultra sound on tumor and it has shrank by 90% so I know that the chemo is working...now I'm glad I started there first.  Proof in the pudding taste excellent!!

Since the red devil was relatively uneventful, I'm really scared to start Taxol, on Friday the 13 no less, hope that is not an omen.  :-)  I'll have 4 treatments of that.   Then off to surgery.  I've decided to do a double though the BS says I don't need it since by brca 1 and 2 were negative, but for my  peace of mind, there are both outta here.  Then 6 weeks of rads.  I have decided on recon yet.  It'll be almost a year after rads before I can even get started so I will have plenty of time to make up my mind.

Anyway, that's my story.  :-)  Hope everyone is having a nice weekend.

Hi Rachel,

I did have the tight heavy elephant sitting on my chest feeling.  I remember it well.  I attributed some of it to that tight surgical bra I was in for a while.  You are about 2 weeks out, you should start to feel that pressure let up maybe after 4 weeks, it will be a noticeable difference.  However, I got the pressure back when the PS started the fills.  I also spaced the fills out and did not do them weekly.  I did them every other week to give me time to adjust.  After a series of fills, one appointment was where I couldn't breathe when I got out to the parking lot.  I called the office later that afternoon and they tried to tell me it would 'settle down' in a few days.  I called back after a few days and continued to insist there was something wrong.  Finally I insisted to see the PS and I told him it was too big for me and making it hard to breathe.  He reduced the previous fill.  He also told me that the front office never conveyed to him my call-ins or what I was experiecing, he was not happy with them.  He said anytime it doesn't feel right to let him know.  So on my exchange surgery I still wanted to be smaller.  He had ordered in 2 sizes of implants to fit on me during surgery, but the day before surgery, I called in and requested one smaller size, so he did order that smaller size in.  He took all 3 sets into surgery and I awoke with the smallest one. 

That pressure will continually go down as you start to heal.  I was also told to drink lots of water and no caffeine to aide in healing, which I did follow.  I was banned from caffeine for 6 months by the PS.

here is link showing how common failure of implants are after radiation...just some info...not pressing my oinion either way...helps to have more info to make your choice

http://www.sciencedaily.com/releases/2012/04/120417102405.htm

The radiation can make such a difference in any way for reconstruction.  Many PS who do natural breast reconstruction also recommend waiting at least 6 months before recon to allow some time for the skin to heal a little...I had a failed diep side (the recon side) which my surgeon has a 1% failure rate...lucky me I guess :0 Went back in three months and hap a gap on that side which looks great!   One thing also is that natural recon usually involves more that 1 procedure to get em just the way you want them.  More Plastic surgery than I ever dreamed I would have but man gotta admit I am starting to look good haha.  It is a commitment for sure but for me I love my choice.  Happy researching

Maggie

Hi Bluestars and Rachel welcome to you both.  There is always room for another TN Bluestars but its sad you have to join us.

Lana and Gwenie I had a single MX too.  Was not my choice, I was recommended to have that without reconstruction and so i went with my BS's decision and never thought to question it, though I wouldn't have done anyway.  The less surgery the better for me, not very brave!.  Anyway when I first lost my breast I was very self conscious and thought everyone would notice when I went out (I'm sure it was all in my head) so I used to wear a light jacket as it wasn't cold to hide the fact I only had one breast.  The day I got my prosthesis was wonderful.  The breast lady was great, everything fitted well and I came out feeling like a million dollars because I now had two breasts again and didn't need a jacket.   It's not a problem to me, the bra's are really really pretty with gorgeous colours and are made very well but looking back I think I would have chosen to have both breasts off and being as I was fairly large breasted like you, would have chosen slightly smaller prosthesis as I have a small frame.  It is always an individual choice but I must admit looking back I would have been scared that the cancer came back and it got missed somehow underneath reconstruction. Only the person concerned can make a decision like that but it's always wise to be fully informed on different levels. My righty took to my adopted one very well and I really don't have any concerns.  

First day of spring here ladies but its not very warm yet as a southerly is blowing.  Roll on the warm weather then I can keep up with all of you ladies.   I hate winter and after having had cancer I still hate winter!.  Wouldn't you think I would be satisfied that I am here to go through winter lol.  It's Fathers day as well so got a special dinner to cook for all the family.
Keep well. Hopefully all of you having treatment won't experience too many side effects. xx

Karen some of your delicious soup would soon get rid of my sniffles I'm sure.  On my way over to get it. 

Oh naan...you can always come here to rant, rave, scream.  anything.  When you said to demand scans I knew exactly what you meant.  We all need to take control of our own situation sometimes by making sure we get the care we need.  We know when something just does not feel right  in our bodies and must sometimes ask, beg, plead, or demand that we get a test that a doc sometimes does not do as part of their "normal" protocol.  My MO does do pet scans regularly for the first 3 years as she believes in them and other docs do not waiting instead for the patient to have symptoms before ordering such a test. Some of us may never be in your situation and therefore could not possibly understand.  Others of us can use our empathy to only imagine how you must feel right now.  I wish they would hurry up and get a cure already.  Too many people are too affected by this.  YOU WILL BEAT IT!  They are going to find the magic bullet soon.  BIG HUGS TO YOU! 

Maggie