Just diagnosed and scared

ladym13

I am new to this site and was just diagnosed a week ago with Stage 3 breast cancer spread to the lymph nodes, I am awaiting a surgery date for partial mastectomy. I feel like I am in a dream, and really need to feel like I'm talking to people that understand all the emotions I'm going through right now.

I am very concerned about reconstruction as I was told that I would need to wait a year before I could have reconstructive surgery, I had no idea it would be such a long wait.

I am terrified about chemo also, okay, now I'm just babbling...any thoughts from others would be greatley appreciated during this anxiety filled scary time

Pure

Well I was so scared of chemo too. I was petrified. All in all it was not hard. i didn't get sick, had no side affects except hair loss, and got through it just fine.

Keep coming back here-we will be here for you and able to help you with questions.

As far as recon-you can get immediate expanders put in at the time of your surgery. I am not sure why they said a year? Be sure to get too opiouns. But  you can get an expander put in which strectches your skin in prepartion for the implant. The expander itself gets filled up.

I haven't had it done but I am sure someone will stop by here and explain more.

kim40

Being diagnosed, told that you are Stage 3, and waiting are the most terrifing parts of this road that we are forced to travel on.

When I was told that I had to do chemo, I was scared too.  But you know what?  I made it through just fine.  There are going to be days that you are not going to feel well enough to do anything, but you will get through it just fine.  Being Stage 3 means that your doctors will through the kitchen sink at you and that's a good thing!

As far as recon, I can't help you there as I opted out of having it.  There are a lot of Stage 3 ladies though that did have it and will chime in shortly to offer you some advise.

I am 14 months from d/x and I am doing fine.  You will get through this.  You have come to the right place for support.  The ladies here are wonderful and will be here for you when you need us.

KerryMac

Just want to welcome you here.

There is nothing about this that is fun, but you will get through it. Chemo isn't as bad as you may think, there are so many drugs now to deal with all the SE's. Stage Three does mean you get the full kit and caboodle which is a good thing!

I didn't do recon either, but I know some Surgeons want to wait until after Rads. If it is something you want done immediately,  get a second opinion, as it can be done.

Come here often, ask questions, vent, we have all been through it, and we all understand! 

ladym13

Thanks Ladies...It is SO nice to be able to talk to people that understand what I'm going through, although I know that my family and friends love and care and want to support me, I also know they sometimes dont know what to say.

The Surgeon told me that they have to wait a year because of the radiation.

I suppose it wouldnt bother me as much if they were taking both of them, but having one just seems so terrifying to me.

A little about myself...I'm 34 with two little girls who are 4 and 6...

I know I will get through this and I'm so grateful I found this site with such wonderful strong women on it.

kimf

ladym13, you are at the worst point right now. waiting is horrible...when you are in active treatment, receiving chemo and rads, you feel as if you are fighting the cancer on a daily basis. Soon enough you will be there. I was 39 at dx with kids aged at the time 9, 7 and 2. It was hard at points, but very do-able. I was able to get up every day during chemo and fulfill my Mommy duties. No, not as happily at all times or as physically fit at all times, but all the premeds kept me from being sick from chemo. I had some bone pain with the Nuelasta shot that gave me more side effects than the chemo itself. But, again, nothing that wasn't bearable. My kids have come out just fine. I'm 5 years out and they don't seem the worse for wear at all.

As for reconstruction, I had immediate recon with a free tram. My new breast made out great after rads. No ill side effects at all from mastectomy or recon. Make sure to get a second opinion if you want to start recon right away. Many, many of us have done it successfully.

Best wishes

kimber3006

Just wanted to joint the others in welcoming you here.  I was standing where you are about 4 1/2 months ago.  As the others said, chemo is not fun, but it's totally doable and the newer drugs to help us deal with the side effects make such a difference.

I was shocked to be told I had to wait so long for the type of reconstruction I want, too (at least 6 months after finishing radiation).  Yet now that I'm a few weeks away from finishing chemo and trying to gear up for radiation, I'm actually feeling thankful for the upcoming "break" from surgeries and intense treatments.  So much of this passes in a whirlwind of emotional and physical chaos, it will be nice to take my time deciding exactly how I want to handle reconstruction.  BTW, I've gone back and forth on whether I wished they had just taken them both in the beginning (rather than having the other one removed during reconstruction as I'm now planning).  I think it has been better, for me at least, to have more time to adjust to the idea of having cancer and losing part of my body and all that it entails.  Personally I'm in a much better place to make an informed, well thought out decision about whether or not a prophylactic mastectomy on the healthy breast is what I really want now than I was right after I was diagnosed.  

Several of did/are doing this with little ones.  My little guy was 4 when I was diagnosed.

Come back often.  It's so nice to have a place where we can just be ourselves and be understood.  This group has been a lifesaver for me.

victoriasecret

Ladym13

Welcome I can add only the same, the women here are a great comfort ...I am 10 months out from hearing the dreaded words ..You have breast cancer...this was the first place I found on the"net" and have found this site to be very informative and the sisters who are walking this journey with you  make it a place to call home.

much love

Cheryl

victoriasecret

Kimber

Congrats on finishing up chemo ...Rads will fly by !!

ml C

KerryMac

I just want to add that my kids were 3 and 5 when I went through Chemo, and we all managed fine. My son (now 4) hardly even remembers it. My daughter gets a little jumpy still occasionally, but is pretty good.

I had very little family help, and in a way I think it helps having small kids, because you just keep going because you have to! 

KerryMac

Another thing, if you get a good prothesis, you will not be able to tell you are lopsided when you are dressed. And naked, it just becomes how you look. It is really not as bad as you think it will be.

lkc

Hi Honey,

Wecome, this is a great place for getting  accurate information and a wonderful network of women for support. As Kim pointed out this is the most difficult time. Once you get your head around your tx plan , you will feel more empowered.

I was dxed with Stage IIIC , 12 positive nodes just about 5 yrs ago. Back then,all the news was pretty dismal for me  I was beyond in a  tizzy! I basically put one step in front of each other for quite awhile

 I had to do  a mastectomy since my partial  didn't get it all, Then did 8 rounds of chemo, rads, and eventually had my lumpy other breast removed. I did bilateral recon ,and am fine today

I am writing this  in a tiny seaside library in the Caribbean as I am here for the annual BC RIDE FOR HOPE. 

 Please remember the Docs  will pull out the big guns for you as tx for stage III  dx. Be kind to yourself, and surround yourslef with positive people. Do not search the net. Lots of inaccurate old data floating out there.

There are alot of us out there, busy with our lives!

God Bless.

Linda

apple

i just want to say welcome.  you'll find much comfort and assurance here.

PraiseTheLord

I went through exactly what you are going through. At 43 getting that news. yes it was like a dream to me too??? I have been healthy my whole life! I had Stage 3 A also and had 3 nodes infected as well. This site helped me to get through my worst fears. I also had a cousin that I did not know very well who contacted me because she went through it as well. That was a tremendous support. worrying about what is going to happen next and the treatment etc.... All I can say Is I was forced to take things one day at a time. One event at a time. I remember it just like yesterday too. The first day I got that news. Yes I was scared and in disbeleif. But I trusted my social worker and doctors. I also was my own advocate. I was on top of everything.

I was back at work 5 days after surgery. Even with these drainage bags on me. That was something I was really afraid of! But again, one day at a time.....and it's not as bad as I thought.

 As for reconstruction, I was in the same situation. 1 year later they told me to consult with that dept. As for me , i was not happy with my options. so I am leaving my chest alone. 

When you take radiation, they have to wait for reconstruction. the skin needs to be replaced. That's what they told me.

 Yes Chemo...being told they got it all...I thought great...I don't have to have chemo. But that is not the case...If I chose not to have chemo/ rads/ herceptin...I was told I had a 75% chance of getting cancer back again.   By taking the above treatment, I have only a 25% chance of getting it back.

It is frustrating. It was hard for me to say yes to chemo. But I weighed out the pros and cons, and I made the decision to follow the doctors who know more then me.

Look I was in good health and a good candidate to get through it. But they don't know how each person will tollerate it. For me I was ok. I worked most every day through chemo..missed about 3 days or so. I took Zofran , so it repelled nausea very well. I only had 2 occasions when i  threw up and it was just a little.

I was on a study with Adriomicin the red one--and oral cytoxin. I took filgrastim injections at home as prescribed to keep my white blood cell count up. It works great.

Radiaiton was like nothing for me. It was just hard going everyday Mon- Fri for 3 weeks for 2 min of radiaiion. Later after 2 weeks my skin appeared burned and itchy. They gave me a wonderful creme called " slyvadene" it gave me immidiate relief.

I had level one and two nodes removed. 3 infected ..they took the whole group..then the group next to it just to be safe.. they left level 3 batch of nodes..they said it will help protect your arm from infection.

Ask for physical therapy right away...my arm was stiff. I received therapy which gave me full range of motion in a short period of time.

I wish you the best. I got through it. I am cancer free since day of surgery. they got it all. Get a support group ASAP.Ask yours doctors and stay here with all of us.

jenn3

Hi - just wanted to welcome you. 

Like the others have said the waiting is the most difficult part.  Once you start treatment you feel like you are doing something.  The anticipation of not feeling well and/or how will you feel is also difficult.  In addition to trying to wrap you head around the diagnosis and learn as much as you can is very overwhelming. Chemo isn't fun, but it is doable and they do have medications to manage the SE's.

Know that you can come here to talk, rant, vent or ask questions at anytime - everyone here is wonderful and extremely helpful.

hmh23

Dear Ladym13;  I was diagnosed on Jan 28, had surgery on Feb 10 and am taking a vacation before I start my chemo on March 29th. I too will have to wait some time for my reconstruction because of radiation.  I saw my surgical oncologist today, and I have healed very well.  He told me that I should wait a good 6-9 months post treatment before I do my reconstruction to ensure the best possible outcome.  I figure if I'm waiting 6 months, I can wait a year to be happy with  my new boobs!!!  There is a book I've recommended to a number of girls on this site that helped me deal with the initial shock and it is one that I continue to refer back to when I need a little pick me up.  Given that you have two young girls, I'm sure your time is limited but this is an easy read to put by your bedside.  It is by Vicki Girard, "There's No Place Like HOPE"  It's amazing!!!

You can get through this.  My doctor also has me on Melatonin and COQ10 for supplements.  These are the only two that he recommended I take.  He is the head of Oncology at the Hillman Center in Pittsburgh.  He is the best of the best.  I start AC on the 29th for 4 cycles so I'm heading into this at the same time as you.  I dream of wellness and feel that if in every cycle there are 3 or 4 bad days, then I can handle it.  3,4 or even 5 out of 21, no problem!!! You are a survivor already!

Take good care of yourself.  Heather  (I'm a fellow Canadian living in Pittsburgh)

AmyIsStrong

Exactly a year ago, I was right where you are now.  I spent the worst month of my life between diagnosis and surgery. I was an absolute wreck, couldn't sleep, eat, lost 12 lbs, could barely function.  You will get lots of good advice here, but I will give you a few of my key tips for surviving this time (otherwise titled "Things I Wish I Knew A Year Ago") :

a. DO NOT BROWSE the internet.  Too much old, dated, and inaccurate information. Too many extremes. Too much stuff you DO NOT need at this time. Stay on mainstream sites only (like this one!).

b. Get an IPOD. Get a relaxation CD. Load CD onto IPOD. Keep near bed.  Use daily or twice/day. It will help you stay relaxed. Also use if you can't sleep. DO NOT LIE IN BED WORRYING in the dark of night. Reach for your IPOD and it will help you fall back to sleep. You need your sleep/rest to take care of yourself, your family, and prepare for treatment.  My CD of choice is here:

http://www.amazon.com/Peggy-Huddlestons-Relaxation-Healing-Instructional/dp/0964575752/ref=sr_1_1?ie=UTF8&s=books&qid=1241124310&sr=8-1  

c. Find local support.  This site is invaluable. But meeting real live women who have been through this and come out the other side will give you a vision for your future. Some cancer centers have young-moms groups for bc women. Maybe yours does. Or if not, maybe your local breast cancer non profit offers a peer counselor or some other real live support. Trust me, it helps SO MUCH to meet women who are living full, healthy, busy, happy lives post-bc.

d.Ask for help if you need it.  If you are too emotionally unstable, ask for medication. It can make a huge difference in the short-term. If your cancer center or hospital has counseling services, consider talking to someone a few times. I met with the cancer psychologist during chemo and it was a huge help, even though I did really well.  They have tips and tricks for managing the emotional component as well as listening and helping you get through it.  I'm not the 'therapy type' but I wasn't the 'cancer type' either. This is a completely unusual situation for you and it really turns your life upside down in the beginning. After a while, you will be an old pro at it, but when it is new it is SCARY.  For example, it was a long time till I could walk into the cancer center without a strong emotional reaction. Now I skip through like I own the place, saying hi to everyone, no problem. But that took time.  Be patient with yourself and do not be too proud or stubborn to ask for help if you need it.

e. Ask for practical help. Do not be too proud or stubborn to accept help. (See a thread here?)  Let people bring meals, clean your house, help with the kids, drive you to things, whatever. For someone as proud and stubborn as I am (see what I mean?), this was a unique time to experience how much people care for and love me, and it was very meaningful.

f.  When people help you, and you are grateful, just make an inner promise to 'pay it forward.' And soon you will be on the other side of this, writing encouraging emails to frightened women, just like I am now.  I never would have believed I could be sitting here one year later having done all this treatment. But I DID IT. And so will you.

Be strong, brave, and let people love you.

That's my advice.  And know that we are always here for you. It is a wonderful safe place to have sisters who truly understand. In the past year, I never felt alone. And that is amazing.

Love and support to you-

Amy

maryannecb

You can do this. )

caaclark

ladym13-

I just wanted to welcome you.  Sorry you are here but we are a pretty great group of women, if I do say so myself!  I have 3 daughters who are now 12, 10 and 8.  When I was diagnosed they were 4, 6 and 8 so I know how scary this is when you have young children.

I won't give you too much info except to say that my kids all came through it fine and so did I.  I was expecting to have a horrible time with everything but it turned out that I had very little side effects.  I had some but there was not one day that I could not function enough to interact with my kids.  That was over 4 years ago now.  I ended up not reconstructing for a variety of reasons so I have one boob and I wear a prosthetic on the side that is missing. 

Keep coming back here when you need to.  We all "get" it and understand your fears.

Diana63

All of the ladies have already said all that needs to be said but I wanted to welcome you. If you hit a wall come here these ladies always know what to say to pull you through. God Bless

JacquelineG

Welcome from me as well! Another Stage 3c and will be 2 years out in June. You can definitely do this and then you'll be encouraging all the newly diagnosed ladies yourself! My kids were 7,6 and 2 when I was diagnosed. They are doing just fine and your little girls will too!

Oh, and it's always good to get 2nd opinions on reconstruction options. I had immediate reconstruction with Alloderm/expanders and then implants. I was concerned about radiation on the expanders but my skin was just fine and the implants seem to be holding up.

 Best of luck to you -- you will find amazing support here!

jackie

diana50

we are here for you; i am 8 years out. you will get great treamtnent and people will step up and help you. right now is very hard; initial shock and diagnosis is tough. they have to gather info and them decide your treatment. once treatment starts...the cancer cells will be 'taken out"  try to rest...very important...ask as many questions as you can...use this site.  sending cyber hugs....

diana

pip57

I am glad you found our community here.  We are a great support system.  I live just north of Toronto and want you to know that we are getting together soon.  Jump over to the Canadian thread and check it out.

Amy had a lot of good suggestions.  You will get through this.  And you will be surprised at how strong you are.  

(Kerry, I see that the curls are gone!) 

AsiaYM

Dear Ladym13,

No one would know your feelings better than all the ladies here, we are all here for you, when you have any question, it doesn't matter what it is, post them on this board.  I was so grateful to have this support and so will you.   Just remember, one step at a time.  One step at a time.

Love and hugs,

Karen

PraiseTheLord

Again, they said after surgery chemo 6 months..then radiaiton...then the reason they can not put in stretchers is because the skin that you have is not the skin they will use when you have reconstruction. That skin will be removed. New skin from stomach or hips or thighs will be taken and used.. then stretchers put in...They told me they would take a muscle from my stomach or  my back and put that under the new skin. Then later apply implant. It would take 3 surgerys. 1st the skin and muscle implant.. then another surgery for silicone implant...then another maybe which includes a tattoo.

This is why I chose not to have reconstruction. I dont' want to have muscle loss in my stomach or back..And I dont want more surgery. They say I can change my mind anytime I want , if I want reconstruction later.

pip57

I forgot to mention that I chose no recon. 

AnacortesGirl

I'm sorry about your dx but welcome to the boards.  This site has really helped me work through a lot of emotions since my dx last July.  The amount of information in the posts is amazing.

I did the chemo first and I'm a week away from being done.  No fun, but with all the supportive medications you can have a life and be on chemo.  I just met with my surgeon yesterday for the first time and in my case she strongly recommends not doing any reconstruction.  But that could be because of my situation.  I'm ok with it -- I want time to get used to my double mast before I make that decision.  I agree that a second opinion could be helpful if you are not comfortable with waiting on reconstruction. 

One other piece of advice.  Get a nice looking notebook and start writing down everything -- appts, phone numbers, questions, thoughts, whatever.  I got one with a pocket to hang onto business cards and other loose items.  Between stress and drugs it can be hard to remember. This became my new brain -- especially with the questions I wanted to ask the doc.

ladym13

I wanted to thank all you ladies for making me feel so welcome and calming me down a little..lol

I went today for a series of tests..chest ex-ray, liver u/s and bone scan...hopefully i'll get the news that nothing has spread, then awaiting my surgery date.

I'm pretty sure I have a long tough road ahead of me...but I have no doubt I'll get through it...this is a hurdle and I'll jump it and hopefully come out a stronger person.

just a quick question...does Chemo make you gain weight..I've been hearing different things on that..thought maybe you could share your own experiences.

Thanks

Mo

Kandy

As far as the weight loss I think it will depend on your body. Some women gain and others lose. I have lost 25 pounds since my treatment started and I now weigh in less than 100. Needless to say, I need to gain.

AnacortesGirl

I started with taxol and the steroids they give you can really increase the appetite.  I gained 5 pounds the first month.  But then the other SEs started kicking in which caused me to lose my appetite and food didn't taste good.  So that offset the steroids and my weight remained steady.  On AC the amount of steroids is a lot less.  My reaction to stress is to lose interest in eating so I had to eat because I'm supposed to - not because I want to.  I'm probably going to end up 5 pounds down after this is over next week.

I do regret not talking more with the nutritionist.  I just had a brief meeting early in my chemo tx while getting an infusion.  If I'd paid more attention I think I would have done a better job getting proteins into my diet.  I think the lack of protiens really hit my blood counts hard.  So my advice is to spend time with the nutritionist.

KerryMac

I did gain - every weigh in I was up 2 or 3 lbs. I don't even think I was eating more.

For me it seems to have come off OK, but I have always had a good metabolism, although I do eat well, and exercise every day. 

Really, i thought a few extra pounds were the least of my worries.