It's definitely breast cancer

Well Girls, The Dr. called me this afternoon and told me the bad news. I honestly was quite well prepared for it especially after all the information you wonderful ladies have given me. I have not cried - but I'm sure I will. I was eerily calm when he told me. My husband was on the extension and heard it all too. He was very shocked. He never thought it was going to be bc. His mother died of it 23 years ago. I'm worried about my parents - they are alot older and my dad's mom died of bc, I hope this won't freak them out.

I am glad that I know now. Like you all have said -it's time to get tough. I was instructed to call a plastic surgeon and and oncologist and now I am waiting for them to call me back to make appointments ASAP. I want this poison out if me! The dr said something about chemo first but I asked him if I could get a bilateral mastectomy before that. I guess we will have to discuss it further. He was very kind - this kind of thing seems to be so matter of fact nowadays. A friend told me 1 out of 3 women will get bc. Its truly unbelievable. I feel numb. I just want to live long for my children.

The dr says he thinks I will be ok. What does that mean? Is it a 50/50 shot? I know- be positive - don't look at the negative. Just be glad I found it right? I just can't believe that in a matter of a week that my life has turned upside down. That I am fighting for my life. It doesn't seem real. I can't believe that the breasts that fed my children could betray me. So weird. I remember as a little girl watching "Dallas" with my mom and Miss Ellie was diagnosed with bc. I asked my mom what the big deal was. She told me that as a woman it is. I didn't understand then. Isn't it odd that that sticks in my mind.

I want to thank all of you that have responded to me and told me your stories and given support and answered my questions.It gave me some topics to bring up to the dr.

I am still scared of course. But at least now I know.

Jen

[mond]

jen i am so sorry 2here about your bad news it made me cry i no it means nothing but atleast now u no and u can deal with it u will b strong as iv heard on here so much ,nolige is power x im booked 4a biopsy this wed i have a lump on my left breast the not noing is killing me all i think about is my daughter its jus always been me and her i will pray 4u when i pray 4myself iv never belived in praying before but now i will try anything xxxx

[HazelLynn]

Hi Jen, I am so sorry about your news.  I have been looking for your posts all day, praying that you would have good news for us all.  Its really upset me.

Take care and keep in touch.  You are not alone in this, we are all with you!
Hazel x

[Patti9234]

Jen
I am also so sorry to hear your news.  You will probably cry tonight when it is dark and the children are asleep b/c you will probably find it difficult to sleep and your mind will be racing and that is normal.  If you have any sleeping pills you might want to think about taking one or call your surgeon back for a Rx.  

Make sure that your plastic surgeon is experienced in breast reconstruction, not just breast augmentation.  Many are not so this is an important thing to find out.

You will be around to see your children grow up and your grandchildren and that will be many, many years away for your 15 month old.

[FJW]

Well Jen,
  This is my first time writing you, and I sure am sorry to hear your news.  You and your family will be in my prayers each night.  Your inner strength will see you through this.  Believe me, you have much more than you realize at this point.  After the initial shock wears off you will go through a very different set of emotions about this whole thing.  Just remember, you have a wonderful family, and support sytem in place. You will beat this! Please keep us all informed of your progress.  God Bless and hang in there. FJW

[Jen1967]

Thank you for writing me and thinking about me in your prayers. I will also keep you all in mine. It is late here so I will write more tomorrow. I so appreciate all of you wonderful women.

Jen

[Irishgal2]

I'm really sorry your got bad news, we were all hoping you would be one of the lucky ones.  I hear a calmness in your posting that was not there before, at least you know now, the waiting is over and now the fighting begins.  You will fight and yes, you will win, just like all of us have done.  I hope your find goods surgeons and oncologists to treat you like I did.  You will make the right decisions and you will find strength in yourself that you never even knew you had, because you have to, 4 lovely children are depending on you and I know you will be around to see your child grow up, graduate from college and your daughter walk down the aisle.  

[devile]

To my dear cousin too far away for me to give you a hug.  I would just love to be with you to help comfort you.  You have your Mother to help with that and your sister will be there for you.  These women are terrific.  I am glad that you found them.  Listen to them, take their words to heart.  Be strong.  You can get thru this with all of the support that has been offered to you.  No doubt in my mind that you will live to see your grandchildren AND take care of them as I do mine.  Love to you as always,  Patti

[katarina777]

Having bc myself, I thought I would let you know that it is not that helpful to tell someone you know they will be OK and see their grandkids grow up. You don't know that. Nobody knows that about another person, even if they were not just diagnosed with cancer. it may help you to say that but not the person you are saying it to.

To jen; I was also very calm almost all the way through treatment, that is. Just let yourself feel whatever you feel; you don't have to try to be positive. for myself it has been harder since I finished treatment. I think though you will be able to stand whatever treatment you have. It's not that terrible, even the surgery doesn't hurt that much. And what choice do we have, right?

Take care, and best wishes from me as well.  kat

[Irishgal2]

Kat, I respect your comments, but remember that someone has just been diagnoised with BC and from Jen's previous posts, one of her main concerns is for her 4 young kids.  She needs all the encouragement she can get.  As you said yourself, you have to stay positive, that is all I was trying to do with my comment.  My boys were 4 and 1 when I was diagnoised last year and personally my greatest concern was being around to see my kids grow up.  Comments like the one I made to Jen was very supportive and helpful to me when I was told the same thing during my treatment my friends, family and even my Oncology Nurse. I do not have a crystal ball and yes I cannot tell what the future holds for me let alone anyone else.  Jen is not a silly woman, I'm sure she knew what I meant.  Her sister in law Patti said the same.  However I do think it is wrong of you to start nit picking at someone else's positive comments when the focus should be on trying to support a fellow sufferor of breast cancer and help her get through the treatment over the coming months.

I wish you a long life and happiness and pray that you remain BC free like all of us hope.

[Katlee58]

I too have breast cancer - with a bilateral mastectomy in November.  Just last week I had my final chemo and will soon start my rounds of radiation.  You are just beginning on a real rollercoaster ride with many ups and downs!  I have probably had them all, so I would be happy to be "a shoulder to cry on".  You will find that you have lots of support from family and friends, but I know that there is pressure to "be positive" all the time and that is not possible.  If you need to feel the worse at times, don't feel guilty - just email me.  I'll be happy to listen.

I have realized that there are many forms of bc and many treatments, so everything may not be done exactly the same for each of us - but one thing is the same.  WE ARE SCARED.  Get supportive friends, get a good book on breast cancer, and get ready to pray more than you ever have.   All of these things have helped me.

Please keep in contact.

Katlee58

[darcytwin]

Aww Jen!  I was so hoping that it wasnt..sigh..You WILL be fine!!  One step at a time..

Try to find a general surgeon, plastic surgeon and oncologist that all work together (know each other, respect each other, etc) ..I found it really helpful and relieving that my general surgeon and plastic surgeon were both joking with me right before the surgery...they actually know and like each other...and the oncologist came very highly recommended from both....i just felt in really good hands....

also, just because your gyno may recommend a surgeon, by no means are you obligated to use them...i personally saw 3 surgeons before making my decision.

its important to get this done, but dont make too hasty of a decision.  Oh, one other thing too....if your insurance allows, get a case manager...that way instead of talking to different people and getting different answers, you will deal with only your case manager and he/she will be able to pull any and all insurance strings that you may need...

Deep breath, Jen baby!!  You can do this...I know you can...and just so you can get used to saying it...."SUCK IT UP!!"

xo, darcy

[traceyz]

I agree with you 200%!!! I was just diagnosed myself last month. April4th to be exact. And when other survivors tell me that I am gonna be fine and that I am strong and can beat this, it REALLY gives me the support I need to make it through!! So I personally welcome those positive words of encouragement. In my heart I feel strongly that Jen WILL win and I like you have no problem telling her that. We are here to lift eachother up. Not to pick on eachother. I hope that Jen takes what she needs from EVERY post to get her through. It's her choice not ours. And letting a BC sister know that she will win does help, atleast its helped me.

So Irishgal, hats off to you for your comforting words to Jen. Her family here will help get her through this.

Traceyz

[Maxmama77]

Jenn,
I hope you received my other posts- I am so sorry this has occurred, but you are STRONG! YOU WILL DEFEAT THIS AND THE OTHER WOMEN, TOO! I have been praying for you and will continue that this will clear soon. I have added you to prayway, too. I am always thinking about you and your family, friends and loved ones are always there for you. In the fall, there is a great BC walk in our area. I try to do these- I am going to raise SOOOOO Much money- this can be defeated! Please take care.
Maxmama77

[darcytwin]

everyone, and i mean everyone needs to hear encouragaing words during all phases of their lives!  

no, we dont know what tomorrow brings..heck, we could get hit by a truck for all we know..BUT, what we do know, is that people do better in ANY circumstance with postitive thoughts and feed back...

yes, you can feel sorry for yourself, but is it really going to help?  id venture not, where on the other hand, if you are positive and stay strong for yourself and for your family, it will be less traumatic for everyone...most importantly, YOU!

Remember, like draws like...and i know for me...positive attitude IS everything...even my husband has a hint of optimism now...so, it truely works.  And if you met my ''glass is half empty'' husband and saw the changes, i think you would agree!!!

use whatever power you can muster up in yourself....girl power, shopping power, kid power, or even cancer sucks power...use it to your advantage....mine happened to be wonder twin power!  

poo poo on negative feelings....they just dont help...as we have all come to realize that life is just too short to dwell on  such wasted stupid emotions...there are people, places and things to see and do...and personally, im not going to let anyone or anything stop me....i love life and will ALWAYS look to future days on this earth!

[Jen1967]

You all have helped me so much- especially the week before I  found out the bad news. I was expecting the worst so I was prepared. I cried all that week so when I found out I was really calm and asked all the right questions. I have talked to many other people and they have given me alot of info, advice, and phone numbers of other women to call who have gone through this 20 years ago or less. People are so caring and loving - but I am kinda tired of explaining the situation over and over. I sent out a mass email to all my friends and family telling them what was going on and they all have emailed or called me back to tell me if there is anything they can do ie. watch the kids, take me to appointments, they are willing to help. They are still calling - so I sent another email today saying that I kinda need to chill out and I will email them with updates and call if I need them- which I am sure I will. I know they are showing me that they care and I am soooo grateful. I think they are in shock as I was last week. It has sunk in now for me and I am ready for the battle- I just wish I could hurry up and start. I hate waiting- I have an appointment next Tuesday to see an oncologist and he will tell me the course of treatment that I need to start. When I talked to the surgeon last Wed (when he told me the bad news) I wanted to get the operation done right away - then I read Tracey's post to me and she said she is doing chemo first to shrink and kill it. So I really dont know what they are going to tell me. I talked to Nurse coordinator last night and she was so sweet and helpful. I will meet her next Tues too. She has a binder to give me all about what I need to do and learn. She told me that I have Invasive Ductal Carcinoma and that 70-80% of all breast cancers are that. She gave me alot of info so I am prepared. I told her about you all and how helpful you have been. She said I am doing everything right. Talking to you all, staying positive, learning what I need to do. I feel so close to you girls- you all know what I'm going through. My family and friends are physically helpful but they are so sad and shocked it brings me down because I feel like I need to stay positive for all of them. The nurse said that I just need to be positive for me and not worry about them - but it's hard. I think the older they are the less positive they can be because they don't know all the great technology out there to help us. But I really don't feel bad - I still feel normal. I just want to play with my kids and laugh at them and feel good and NORMAL! Geez- I always felt like a little kid -I never wanted to grow up- now I really am going to act like one with having to depend on others to take care of me.

I'm sure it's going to be a long haul. They surgeon said chemo for a year. But I will find out Tues I guess.

Love you guys- I'll let you know what's going on-

Jen

[Irishgal2]

You are doing great so far, you should be really proud of yourself.  Like you I decided to e-mail my friends and tell them all in one go with an e-mail.  I was'nt ready to talk.  What I did was get people to e-mail and text me and I would keep them updated and then when I felt like talking, I would ring them.  At least they were kept in the picture as they all worried and I got the space I needed.  It is only a suggestion, but it worked for me through my treatment.  Also when I met up with friends for a night out, 10 mins only was allocated to ME and BC and then I insisted on talking about girlie things and having a good gossp.  I felt really normal during these times and like my own self.  I was Annette again not the friend with BC.

Just wait and see what the first consultation say and then take it from there.  It's not an easy road, but one you have to take, but you will get to the other side.

Funny you should say about hubbie, family and friends.  I too seemed to be the strongest of my family and friends when I was told, I just kept thinking positive.  It was very hard not to worry about the rest of them, when that is what I have always done, I'm a born worrier.  What I did do was tell people was that I did not want their pity, misery and downers around me.  I filled my live with positive things and positive people.  And you know what, my optimism rubbed off on others and before I knew it, I felt like I was living a kind of normal live and felt like me.  In time, I hope your family and friends will feel as optimist as you, just give them a little time.

I remember the day after I was diagnoised my best friend who lives in San Fran but as luck would have it was home in Ireland for a holiday during this time, came up to see me.  She said that she has never walked into my house and seen it so calm.  It was really weird, but we all just slowed down and had more time for each other.

This forum was great for me during my treatment.  There was loads of positive advice from the army of sisterhood and also, I felt that they really understood what I was going through.  As much as your family love you and want to help, at the end of the day they really find it very hard to understand.  I sometimes think the only people who really understand and the women who have been there before.

Use the forum as much as your live for support, we are all here to help.
Good luck with the consultation.

[mond]

u woman r fantastic such lovely words i hope if i get bad news on this wed biopsi i can b as strong as u all ,jus reading these posts make me feel better im so so frightened but this place gives me so much x its jus me and my daughter so i dont talk 2any1  this helps loads , jen im  thinking of u xxxxxxx mandy [mond]

[darcytwin]

lol...i had to laugh at your 'i feel normal' comment....you are normal!  i remember feeling the same way and kinda put out of sorts that people treated me like i was sick...i wasnt ''sick'', i just had cancer..now its gone and i found out that im still 'normal'...boob or no boob!

[Greta_L]

I am sorry to hear that you are going through this struggle, but the key thing is, you will get through.  Each treatment choice you make improves your odds.  I am a 2 year survivor from a mastectomy and tram flap reconstruction followed by chemo and taking an estrogen inhibitor. Information is your best weapon, there are good books, (Dr. Susan Love's comes to mind) and good websites to help you make informed decisions. Obviously there are a lot of experienced women here at this website to help you.  The hardest thing for me was the not knowing and making those inital treatment decisions.  Once I decided on a treatment plan and started the fight, I felt calmer.  One thing about those decisions......they are yours....just because one doctor recommends something doesn't mean it is right for you.  Get multiple opinions and don't be rushed. As another advised above, find a treatment center where surgery, radiation, oncology and plastic surgery all work as a team.  Usually University hospitals offer this.  
You mentioned being tired of explaining the situation over and over and the good intentions of your friends and family.  My advice here is to use a website that was invaluable to me.  You will find it at http://www.caringbridge.org/ and you can create you own site for free.  Then send the link to only the people you want to have updates, no one can access it unless they know the exact address.   You can determine how private or public you want to be. It is so easy to set up, you don't need to be a computer genius and you can include photos.  They have examples there.  I kept a journal there that my friends and family could go to to get updates. They could read in my journal whether I was needing a call or whether I needed some quiet time.  A crew of co-workers even came to my house when I lamented that I didn't have the energy to plant my flowers.  The writing can be very therapeutic too!
One last thing, and this is hard.......your freinds and family all offered to help, but they don't know what to do. The hard part is learning to ask for help.  We all want to be brave and strong, but asking for help is not weakness.  Reach out from your journal and let them know when you can't clean your bathroom or when you need someone to pick up your kids. Let them make a meal or pick up the groceries.
Most importantly celebrate the living and rejoice in the advances in medicine that are making this journey easier.

[Jen1967]

You are so optimistic - man, were do you get it? Were you always like that? I sure wasn't. I was born and raised a pessimist. But boy has my attitude changed! It's amazing what a bad diagnosis will do for your brain, huh?

Did you go to a general surgeon or a breast surgeon? The guy I'm seeing is a gs. I am seeing an oncologist and plastic surgeon he recommended. They are a team and work well together Im told. I can't even talk w/ the ps until she calls me June 9th. She is away and she is the one to make the appointment. I was told that she was booked up to July. I guess I'll figure that out when I see the oncologist.

How long did you wait from the time you got your diagnosis to the time you got your surgery and/or chemo? I want to get second opinions and meet with different drs but I dont want to waste anytime. I feel like this thing is growing and I want to get rid of it ASAP. My sis- in-law's sis-in law is a dr over in Philly and she went through this last year. She said that many local hospitals are really up on the latest techniques. But I just don't know. I want to go to the best and I have heard not so great things about the hospital these drs are associated with. Apparently poor nurse care. Uhg, more stuff to worry about.

Were your lymph nodes involved? Under my arm is sore- maybe I'm just being a worry wart.

xo Jen

[frustratedrg]

hi, i read your post about your friends and family calling and calling.  when i was first diagnosed i started to tell my friends everything, but it started to feel a little frustrating to have everyone start to feel sorry for me.  after all, they didnt know what to say and i was really doing fine, most of all trying to feel normal.  i remember one night one of our male friends who we were out to dinner with said to me "how is the chemo" and my response was im doing fine, its ok.  he responded with "it cant be OK". that kind of psst me off as i was out for a pleasant evening and he kind of took that away from me.

  anyway, my point is that most of the women here kind of know what were up against and what to say.  thats why it has helped me alot on this site.  my friends, although they try to be supportive, NONE OF THEM HAVE BEEN THROUGH IT.  so i truly feel that its ok to not want to talk when you dont want to and dont feel bad about that.  

so although it will be utterly HARD to have a nice weekend, TRY YOUR BEST

[BJSaws]

Hi Jen,
     I thought I would respond to your question about the length of time before surgery.  I was diagnosed in late September 2003.  I wanted to go to a regional cancer center instead of using a local oncology center.  By the time I saw the surgeon and he was able to work me into his schedule, I had my surgery on November 20th.  I was very concerned about the length of time before my surgery, but he assured me that it would not make a difference.  I had a mastectomy, so perhaps that is why the time was not so crucial.  I had a sentinel node biopsy at the time of the surgery and my nodes were clear.  I followed that with four cycles of AC chemotherapy.  Since then, everything has been fine.  It will be five years this coming November, so apparently the surgeon was right about the time element.  My tumor was triple negative, so I did not have the option of hormonal therapy (Armidex, Tamoxifen).  So far, I have just had regular blood work and visits to my oncologist.
     I do know others who have had surgery within two weeks of their diagnosis.  They, too, are doing fine.  My advice would be to do it as soon as possible, but don't stress if it's not as soon as you would like it.
     I do know that sometimes chemotherapy is given before surgery if the tumor is above a certain size.  Mine was 1.1 cm so the surgery was done first.  Do you know anything yet about the size, type, grade,etc. about your tumor?  Those factors will all determine if you have chemo and then surgery, or the surgery first.
     My thoughts and prayers are with you.

[darcytwin]

yes...ive always been happy and optomistic...i drive my husband crazy...oh well....here was my scenario

diagnosed late july 2007

several mri's with contrast/drs appts and decisions august 2007

mastectomy with chest expander
sept 29, 2007 (3 days in hospital..lots of morphine! whoo hoo!)i went to a gs..who specializes above the waist surgeries..(it also helped that i knew he and his wife from remodeling their kitchen)..

chemo
nov 17 2007- feb 28 2008 ..six rounds of taxotere, adrimyocin and cytoxine.

reconstruction
on mast side may 6, 2008

breast lift-augmentation on good side/tatto/nipple repair on bad side
tbd...probably in august some time...


i had one lymph node involved so hence the six rounds of chemo..joy oh joy!!
seeing that youre tiny, youre probably good for the breast implant rather than a tram flap...i would check into having your ps piggyback your gs to start reconstruction...it helps a lot....i went to see one surgeon who wanted to wait 6 months...i wasnt going for that....im a pain wimp so the less operation the better...

funny side note....i guess when i got out of the operating room, i asked the nurse if i was still alive....i dont remember saying that, but i guess i was more freaked out than i let on...nothing like letting your subconsious do the talking :)

[Patti9234]

You are very likeable!!

[darcytwin]

Thanks!  I try to be!  Its a lot more fun being liked than hated...besides, like i said, life is just too darn short to be caught up in pretenses...i am who i am...and that is probably the best thing that ive learned in the last year!

[Jen1967]

Boy - what a stupid comment that guy made to you. Some friend. I do feel like some people are pitying me - I hate that. I saw a book called "I am not my Cancer" Good title.  I have a few best girlfriends who keep calling - I know they care immensely. One told me her mom in law knows the best breast surgeons over at Penn Hospital and my ob/gyn said she would ask her contacts who are the best there too- thats who she is associated with. But like my friend said - I might not be able to get an appt soon if I dont have an "in". So thank goodness for her.

What did you have done?

[Jen1967]

Hey thanks for the info - my ob/gyn told me yesterday that a few weeks shouldn't make that much of a difference but I am so anxious to rid myself of this poison. I feel like there are creepy crawlies in there. I guess its the healing of the biopsy needle but its freaking me out. I just keep picturing in my mind the good white blood cells on their white horses with lances poking and jabbing the nasty evil cancer cells! Mind over matter.

[Jen1967]

Hey Mandy

I've been thinking of you too - I hope you turn out to be ok. But if you have a bad diagnosis at least you are prepared - these women are incredibly supportive for me and have given me so much great info on what to do, ask, and feel. I know it will be a shock but you can handle it. You have raised your daughter by yourself it seems so you are strong!

[Jen1967]

You are so awesome. I am glad I found you. I am really thinking of doing both sides at once even though the cancer is only in the left. I don't know if I'm being overly cautious because I never had a problem in the right but I dont ever want to deal with this again, ya know. Plus I want them to match right away and if I'm doing one and going through that pain I might as well get it all over with at once. I know that the plastic surgeon will be there in the operating room during the mastectomy - so they told me for reconstruction to start. You gals have told me about skin saving/sparing and I asked the dr about it. He said the left would  not be a candidate for that since the area is so big where the calcifications are. But the right probably would be fine.

Were you sick from the chemo? Why did you need to wait to get the reconstruction done? Could they not start it right after the mastectomy? Or was the expander placed in then?

thanks - xoxox

[frustratedrg]

hi Jen,  my history:  2001 diagnosed.  at the time of surgery, had 5 biopsies.  (2 palpable lumps, 3 clusters of calcifications).  1 lump was cancer (1.3 cm invasive lobular) everything else was benign.  went back in for sentinal node biopsy and lumptectomy. Nodes were clear.  (stage 1).    had chemo (6 mos.) then had 1st mammo before radiation.  Radiologist found another suspicious cluster of calcification.  I went in for surgical biopsy scared to death, but it was benign.
then i had radiation (6 wks).  
After radiation, about a year later, i had a horrible scare.  Found a red lesion on my breast.  Had biopsy.
Had a MISDIAGNOSIS.  the lab thought i had a very aggressive vascular lesion due to radiation.  scared me again.  my breast surgeon decided to have a second opinion.  had my biopsy go to JohnsHopkins in NYC.  After 1 very LONG week, she called to tell me they thought otherwise.  She then sent it AGAIN to a prominent Dr. in Italy who used to be head of Mt. Sinai. after another long week, he too agreed it was fine.

After that I had another biopsy due to linear calcifications: BENIGN
After that I had a needle biopsy just about 6 mos. ago for an area of lumpiness - BENIGN
and
NOW, after mammo in April, another cluster of calcifications appeared.
I have a biopsy scheduled in 2 weeks.  Soooo, I face the probability once again of
bad news.  
So that is where I stand.  QUITE A SAGA HA?

[Maxmama77]

Just wanted to let you know, my mom's friend had bc several yrs ago, it came back and then she had everything removed. It is gone now. She didn't do the full reconstruction, as she didn't really mind.  She is doing great- goes to church, choir, takes grandkids out, etc... You are a trooper just like she is, and you will do well! You are such a wonderful person-May you have a blessed day. I was also reading on another post of different women, moms, grandmas etc... who have had bc at a young age-now they are with grandkids and are in their late 60's on up.

[darcytwin]

i did have the chest expander put in at the time of the mastectomy...then every week the ps would fill it with 60 cc's of saline till i was about ready to either pop or float like a off center bouy.....he ended up filling it with 600 ccs...then with the implant (i got the silicone gel) he put 500 ccs....so on the left side i am now a small c and will hopefully be a small c on the right side by the end of summer....

just remember to do your stretches...they are SOOOO important to keep your mobility..as i told another girlfriend...work thru the pain...if it doesnt hurt, youre not stretching!!!!

[traceyz]

Hello Darcy,

I sent you an invite to be a friend and I hope you got it. You are awesome!!

Tracey

[Jen1967]

Holy cow! What an ordeal. Uhg - I hope it all turns out benign again for you - but what an emotional roller coaster you must be dealing with.

Hope Im not getting too personal - but how old were you when you found out in 2001?

Jen

[Jen1967]

Thanks for your info - I had a husband of another bc survivor write me (on my scared sick post) and he was so supportive. He told me that yes it is a big ordeal - his wife had a bilateral, chemo radiation and reconstruction - but it is not fatal- it is one of the most curable cancers.

He was really great - Im going to put his post on here for everyone to read.

Thanks sister
-Jen

[Jen1967]

How did you come to the decision to just get the one side done? Did you see pictures of other women with one side reconstruction? Did it look the same? I was really thinking about getting a bilateral now I am reconsidering. I just dont know what to do.

Since I have no history of having problems with the right side I dont know if Im just being paranoid or cautious.

Jen

[Jen1967]

I wanted to share this with you all- it was on my original post Scared Sick- I just found it last night. This man really put my mind at ease and put alot of my fears into perspective.

by Gardini, May 31, 2008 10:14PM
To: Jen
I am the husband of a breast cancer survivor, who had chemo, double mastectomy, reconstruction, and radiation. I read your initial post, and what leaped out at me was the seeming lack of detailed explanation or compassion given you by the treating physician.
We were so fortunate to receive wonderful care from the Hershey Medical Center, Hershey PA. There is a unit specifically dedicated to women's breast health care and treatment.
I went with my wife for the initial consultation, and at the conclusion, the attending nurse was so kind, and reassuring, she looked over at me an said, "You need a hug too." And hugged me.

They care for the person, the family, the relationship as well as the disease. Perhaps you should consider finding a treatment center that is a bit more "user friendly'." I may have read more into your post than was really the case, but as a caring husband, I declare that with proper communication and care, there is absolutely no excuse for you to be this upset. Mildly concerned, a bit anxious is understandable, but certainly not to the extent this has bothered you.

Breast cancer is treatable and curable. Of all of the possible  cancers, it is one that has had great treatment and cure success. This is no picnic, but it is also not devastating and terminal. There will be difficult days during treatment, but there is no cause for panic and fear.

Take good care,
Gardini

[Jen1967]

Oops - I reread one of your posts and it answered my previous question about why you only did one - maybe I am just be overly cautious.

Jen

[Gardini]

What happens next?

Lot's of tests, MRI's CAT scans. PET scans, blood tests, possible brain scan. You will need to be prepared to spend time taking these tests; that will tell you the current state of the cancer, and therefore the appropriate treatment,

In the case of my wife, pre-surgery chemo was necessary to shrink the tumor as it was large enough to be a problem for immediate surgery. There were 8 chemo treatments 2 weeks apart, and a 6 week recovery period prior to surgery.  They did the double mastectomy and the reconstruction at the same time.

From the husband's standpoint, these are things that you should be thinking  about and planning. Each person reacts to chemo differently. There will probably be a loss of appetite. In the case of my wife, for the first week there was an unpleasant mettalic taste rendering food unappealing. Milk, soup, toast seemed to be tolerable.

There very well could be fatigue and some (although slight) nausea. Much of this is controlled by medication and these side effects, while unpleasant are in most cases, minimal. MY SUGGESTION: Plan your family meals ahead; have some help for doing the dishes and laundry. In your family situation, minimizing your daily housework efforts will allow you the strength to spend with the children. If they see you reacting fairly normal, they will not be upset. They take thier cue from you.

Here is a big one, although it may not seem so.  You will lose your hair. Take time now to find a good wig, that is a close match. Do this while you have time as you will apppreciate it during the chemo stage. My wife is 68 years old. She went to the beauty shop, got a mohawk, put on my leather jacket, had her picture taken and sent to the grandchildren. The grandkids said, "good one, Grandma" and the light hearted touch kept grandkids informed but not worried.

She also took time to find some hats to wear around the house to keep her head warm, as she did not wear the wig 24/7. People at church had no idea that she lost her hair, the wig match was that good, and it was an allowable medical expense.

There was a routine for taking chemo. First, blood was drawn and tested. The results were  reviewed before anything else was done. There needed to be a certain level of recovery from the previous chemo before the next treatment was administered. My daughter went with her into the treatment room. She would bring down a tasty lunch, and sometimes my wife would fall asleep during the process.Often on the way home we would stop at a favorite restaurant and have a good meal, before the unpleasant taste returned.

So, line up some help, plan your meals, get information from the American Cancer Society, they have wonderful booklets that will help you. Be proactive; this is going to be about a one year journey start to finsh.

The single most harmful component of your circumstance, is lack of information. There is no reason for fear, getting well has now become your primary job.  As you have discovered, you are not alone, and this is curable.

Stay in touch, we will pray for you.

[darcytwin]

yup there is a horrible taste in  your mouth..it wasnt metallic to me but bad medicinal...like that cloreseptic throat spray but 10xs worse...the further along in chemo (rounds 5 and 6) the longer the taste lasted....the only food that was salvagable was any type of potato...french fries and mashed...****STAY AWAY FROM YOUR FAVORITE FOODS WHILE ON CHEMO** because you may never ever like them again...i cant stand ketchup or lemonaide now....but i figured i came out pretty good...

bring your bestest and funniest friend with you to chemo....i brought my jen and we played backgammon, the cross word puzzles...and laughed the whole time, oh and argued about who was cheating during backgammon....the staff dubbed us Lucy and Ethel....we would get the whole room laughing...but it did help not only my morale but others as well..

yes, go wig shopping now...a good wig store will then fit the wig to your head once your hair starts falling out...a good wig can go for 200-500...and thats synthetic...but darn do they look good!!  i now have a wig addiction...i have 5...(blush)...my reason was when i had hair i could style it many ways...so hence why i need so many wigs...i need variety..besides the fact that i adore confusing clients....some of them cant figure how my hair goes from long to short, dark to highlighted...hehe...

oh and it may not be covered by insurance..mine wasnt and i have awesome coverage, so just be aware...BUT the cancer society will give you a free one (there should be a c.s.store near the hospital)...

i agree read, read read....the most informative book that i read was not dr loves book (although that was good, but waay too technical...) but one written by a husband...its called the BREAST CANCER HUSBAND by marc silver...it was well written and informative....

hope some of this helps......

xo, darcy

[Jen1967]

Thanks so much for your information. I really never thought to buy the wig(s) now. I still feel like this is all a bad dream. I feel great - but I know that wont last. I made phone calls to drs ALL DAY today. Boy am I tired. But I have a few appointments made. I see an oncologist tomorrow, another surgeon next Tuesday and the plastic surgeon next Friday that the first surgeon recommended.

I also heard from my ob/gyn -she told me the "best breast surgeons" in Philly but I couldnt get an appt with them until June 23 -I said forget it. But my gp, ob, and another dr my friend asked - all highly recommended the team I saw first. So I just might stay here in south Jersey just in case there are any complications after surgery - I wont have to cross the bridge and drive 30 miles.

I think I just ordered that book - breast cancer husband on amazon. I am getting so much information that I do feel like I have a job - Irishgal wrote me and said she managed it all like a job - like she was doing it for someone else. Thats how I feel.

Every morning I get up and its like I have to go through it all over again. Man-when will that feeling end? Hopefully once I start it all and get it going. I hate the waiting.

I'll keep you all updated - I cant tell you how much I appreciate everyones input.

Jen

[frustratedrg]

hi,  of course your not getting too personal. i was diagnosed at 47.

Jen, I dont know what kind of chemo you will have.  Do you know?  I had CMF and did not lose my hair.  If your lymph nodes are not involved your chemo may be CMF and that regimen is very easy.  So I dont think its a fact that you will have the same drugs as this husband's wife had.   I was NEVER tired or naseaus or sick.  So wait and see what you are given and besides everyone does react differently even to a more intense drug.

When I began chemo i was very afraid and met a woman who was just finishing CMF.  She told me I would feel fine and believe it or not I DID.

[Gardini]

Frustratedrg is correct; there are different reactions to different treatments. Wait until the plan has been formulated, they will tell you if you are going to lose hair.

Now, here is some pertinent advice for the next few days.

Take someone with you to your appointments, be it husband, sister, mother. purchase a new  a notebook, and pencil and have your  companion take notes. A lot of information is flying by rather quickly. If there is too much too fast, stop the Dr and ask to repeat.

here is one example: My daughter is 35 years old, and does excellent office type work. She took notes so that we could review and study what was going on, time tables, medications etc. we were proactive and well informed, and yet ...... we misunderstood the chemo plan. For some reason we confused 8 weeks (four treatments) with 8 treatments (16 weeks) As we checked in for the fourth treatment we left a bit discouraged as we were only half way through.

You won't get everything right, there is just too much going on, but having a notebook is really important. Keep a record of visits by date, and log your milage to and from. Keep it all by date. later on you will be very glad you did.

Gardini

[Irishgal2]

Hi Jen,

As the other folks said, you are in limbo land at the moment and you do not have all the facts of your situation in order to formulate a plan.  Things will become clearer after your first consultations.

For me personallly my lump was 1.9cm and I wanted it OUT immediately.  I got my biopsy results on the Friday and had the operation (Lumpectomy) on the Monday.  If the doctor is considering doing chemo first, ask why and see if you are happy with the explanation.  Ask the doctors (all of them) to give you alternative and the benefits of
each.  There is nearly always more than one option.

I had 4 cycles (every 3 weeks) of AC Chemo and as frustratedrg, waiting until you see what chemo they suggest.  The side effects are different for each and also from person to person.

I did loose my hair and brought my sister wig shopping before my chemo started.  Because I had an unusal colour hair, it has hard to get a match but I did in the end.  My wig was human hair so I could wash, style and get it cut in the salon.  It looked very natural on me.  I can remember one of my best friends in my house during the chemo.  We were sitting at the kitchen table with a pot of tea between us gossiping when out of the blue she said to me "is'nt it great that you never lost your hair".  I looked at her and waiting for a smile.  None appeared.  I then asked her was she taking the MICKEY and she said no, why?  My friend who was sitting 2 feet from me did not know it was a wig, well let me tell you it was the best compliament I got during the whole treatment and I was on cloud 9.  It is better to be prepared if the chemo you will be on will result in you loosing your hair.  We can talk more about chemo later when you have visited your doctors.

The focus for now is to get as much information as possible and agreement a treatment plan and very importantly, a timeframe.

Keep in touch.

[taktamtaw]

I was diagnosed with invasive ductal carcinoma of right breast after a negative core biopsy.  I just kept at it and found a surgeon.  I also had 18 lymph nodes removed plus 34 radiation treatments.  I have been taking femara for 16 months. I am very fortunate I did not let the negative core biopsy be my only treatment.  I will pray for you and all our sisters with breast ca.  I met a beautiful woman, Vanessa Echols, Channel 9 news anchor person at the Sunsan G Komen Race for the Cure in Orlando, Fla.  last year.  Vanessa gave me some advice being a breast ca survivor:  Talk the talk, walk the walk, and keep the faith.  And if you feel sorry for youself, please don't feel alone.  New cures and treatments are being developed every day.  My husband has been such a good supporter,  My sisters (2) have been my rocks.  Love and God will help you deal with your illness.  Contact me anytime. taktamtaw

[healingwell62]

Hi Jen,
I looked through all the posts and could have sworn I'd written you, but I do have a big case of chemo-brain, which leaves me a little spacy!

Take it a day at a time.  Learn facts.  Make decisions based on the best information you have now, then move forward.  I'm sending my friends my book suggestion for this difficult waiting time.  It's "Seven Spiritual Gifts of Waiting: Patience, Loss of Control, Living in the Present, Compassion, Gratitude, Humility, Trust in God"
by Holly W. Whitcomb.  It's not overly religious, more spiritual.  I found it to be very calming and helpful during the limbo time.  Even now as I'm mid-chemo, and I'm waiting for the next step, which has yet to be determined -- more surgery or straight to radiation (the answer will be made with some facts following genetic testing) -- I pick up my "gifts of waiting" book.  There are gifts, especially for those of us young busy women who rarely slow to the screeching halt the the CA diagnosis brings about.

Sending you love, calm, serenity and clarity.  Please contact me anytime.  We will all grow old to rock our grandbabies to sleep!

Chris

[Jen1967]

I had a Mugga scan today on my heart - at 8:00am. They had
to inject me with radioactive stuff. yuch

I have a cat scan and a bone scan on Mon. Thurs I have an mri and a chest xray.
then I have to get a lymph node injection at 3:00 so I can have a lymph node biopsy
done Fri - out patient surgery-they are knocking me out for that.

Really fun trying to organize sitters. -Mostly my mom and sis in law - probably hubby
too.

But.... here's an interesting thing. I was looking online for places near me
that specialize in breast cancer. I found Cooper Hospital in NJ has just such a place.
So I called and a nurse coordinator (Ann) called me back (last week?) and said she
would call me with an appointment to see someone. So Wed I had been on the phone
all day making appointments and I was just spent (and still very upset - my parents
had to come over to be with me I was so bad) and this nurse called me with an appointment for yesterday. I told her who I had seen and what they said and that I couldnt bearto make yet another appointment - I told her Id call her if I felt like seeing someone else. She was cool - not pushy.

So yesterday she called me again - but this time she had talked to another oncology
nurse who - it so happens- is really good friends w/my sister. The nurses name is
Sue and Ann told me that Sue was telling her about "her best friends little
sister" and she mentioned some of the drs names I had seen. Ann said - "I
know her!"  So she called me back - and this is weird too- I had gotten the
name of the chief oncologist breast specialist Generosa Grana from my dentists receptionist.She got her name from one of their patients who went through this and LOVED her.

So for some reason all this felt like it was a sign from God. - I really got a great
vibe from this nurse Ann. For her to go out of her way and call me back like that
- I'm sure they arent hurting for business. Plus they are just a center for
my particular problem. And they have offices  close to me.

I looked up acredited medical places -someone on the net told me about it- and only
Cooper was in there.  Dr Grana is on the net - she apparently is well known.

So I have an appointment with Dr Grana on Monday the 16th. I am hoping she is the
one for me. I have talked to other women (my pre school owner in fact who had a
tumor in her face 20 years ago and is great now) that say I will know when I've
met the right dr. I'm sure the drs I have been seeing are very good and they
are nice and all - but I would really rather go to a woman - and her breast surgeon
is a woman who only specializes in this.

So Im holding up ok - trying hard to be ok for my kids - I always think of my babies grown up too.

Jen

[Greta_L]

I am so glad to hear that you are finding help that you are more confident in.  
I didn't need a wig until about 14 days into Chemo.  I had fairly long hair so I found a local beauty salon that would cut it close to my scalp for free and donated it to an organization that turned it into wigs for kids with cancer (Locks of Love).  Your hair needs to be at least 10 inches long to qualify.  So I had a "boy's cut" but a little longer in front that I wore for about a week before the hair started falling out.  Having short hair fallout was less traumatic than if it had been long and I felt good that I might have helped a child.
It sounds like Cooper is the sort of breast center that should have plenty of info from the American Cancer Society.   They gave me my beautiful wig through a program with the Susan B. Komen foundation. They also sponsored classes with free makeup and gave us scarves too.  There are a lot of folks out there waiting to help you.

[darcytwin]

glad all seems to be coming together for you!!  yes, i felt the same way re my doctors..it was a sign from God.  Mine happened to be a client of mine...right before surgery, I asked him if he loved his kitchen...and he said yes...then i said...do you REALLY LOVE your kitchen???  he looked a little perplexed and i said, well if you didnt, im not sure that i want you cutting on me....lol...he just gave me a big hug and smile and said yes, he LOVED his kitchen....lol...i felt completely at peace!!

Stay strong sweetstuff, youre doing great!!!!  and when the boogie man blues come, just start singing...''one foot in front of the other....and soon youll be walkin thru the doooor.."

xo, darcy

[Jen1967]

Did you have radiation or do you need it now? The oncologist I saw told me 6 months chemo then mastectomy and hercepton and radiation last followed by 5 years tamoxifin (tamoxifen). Is that what you did?

You are so positive and strong and funny - you and all these other ladies know what Im going through. I feel like I cant even talk to my best friends - they have no idea how i feel
\\

Love you guys
Jen

[darcytwin]

no i didnt have radiation....i was told that since i was having the mastectomy (hence the boob going bye bye) that i didnt need it....so, i dont glow in the dark like some of you!! hehehe.....

a girlfriend of mine had a lumpectomy, chemo  and radiation (and personally i think that she should have had a mastectomy...her tumor was 5cm with 2 lymph nodes involved)..anyway, her nipple inverted and hasnt popped back out....so she has to have a surgery to pop that sucker back out.....sigh....what we go thru!!

[traceyz]

Just wanted to say hello and that I pray for you daily.

As for radiation. I to as darcy put it will be "glowing in the dark" lol!! My tumor is 3cm with 1 node involved. I meet with my surgeon tomorrow but I think radiation limits what kind of reconstruction we can get.

Hang in there girlfriend. We are all sisters and here to help eachother.

Keep us posted and be well!!

Tracey

[darcytwin]

i wonder why some have to have radiation when they have had a mastectomy and why some dont....wonder what the  rule of thumb is, if there is one.....???????

[Greta_L]

I was told radiation with lumpectomy or radiation with masectomy only if more than 3 positive lymph nodes.  Mine was invasive ductile carcinoma, maybe other types had different rules and that was 2 years ago.  
I had 4 positive nodes and went through the masectomy and chemo, but when I met with the radiologist he said I was definitely borderline if it would do more good or harm.  I already had a TRAM flap reconstruction at same time as masectomy and there was risk radiation would damage it or more likely cause edema in my arm.  
Here is the weird part. He said statistically radiation would reduce my chance of recurrence, but not my chance of death.  At 10 years the chance of death was the same whether I had the radiation of not post mastectomy. I made him repeat that part. So, I decided to skip the radiation.

[Jen1967]

Thanks for the prayers - I think my prayer chains are half way around the world by now.

Greta - that's interesting about the radiation. The drs told me that they were going to treat this bc really hard - rads included after the mastectomy. I'll do anything to kill it.

I talked to a great nurse today where I had my cat scan. She was around 38 and had a bilateral 2 years ago with chemo and rads (I think). She answered all my questions and was just awesome.

I have an oncologist appt tomorrow for a 2nd opinion. Woohoo.

You sisters are my new friends - I can talk to you much easier than anyone else now. What a club!

Jen

[BJSaws]

Hi Jen,
     I just wanted to let you know that we will all be thinking of you tomorrow.  I hope the doctor is able to give you some definitive answers and that you feel comfortable with him/her.  Please ask any and all questions that come to mind.  Once you have a plan of action, you will feel better.  Hang in there!