Ocologist Appointment

I had the oncologist appointment yesterday. He was very good. I am HER2+ He said that I would start chemo first before surgery to shrink it and kill off any cancers floating around. The way my husband explained it to me -he's really smart and reads alot about it- is if they take out the mass first all the other little cancers that could have escaped and are wandering around say "they took the mothership - attack!"

So the first round is  AC once every 3 weeks 4 times. Then Taxotere every 3 weeks 4 times and at the end of that hercepton every 3 weeks for 1 year. Then mastectomy and radiation and then Tamoxifin (tamoxifen) for 5 years.

Before they start that I have to get an out patient node biopsy next week and heal for a week before chemo starts. Im supposed to start on the 16th of June.

I have to get bone scans, chest x ray and an mri too.

So much to do and think about. My head is still spinning. I  am so scared still - I was a smoker not too long ago - what if this is in my lungs? I get myself worked up about it. I just feel horrible. I felt better yesterday until I thought about the lung x ray. I keep looking at my kids wondering if I'll see t hem grow up. I'm trying to be positive but I'm so worried. I hate this. I hate that I can't think about anything else. I can't concentrate on anything but bc. I am all alone with my kids and I try to be normal mom for them but my mind is so preoccupied I can't even enjoy them.  Its hard to do my normal routine. I am a worrier.

Now I have another dilemma- my good friend has a connection with a top doc over at Penn. I called him yesterday and he contacted me later after I saw the oncologist. I told him what the oncologist told me. He wanted to know why not surgery first - then he told me to physically get all my info over to him in Philly by Thurs of this week so i can meet with him next Tues. If I cant get them to him by Thurs, then I cant see him til the following week - but I start chemo that week. So today I have to make alot of phone calls trying to get my reports and slides -which I tried to do last Monday and the records person thought it was very weird that a patient was trying to get my own records - they said normally a dr calls for that.

I just want this all to be started so I can see or feel some sort of peace. I can't stand all this wondering and waiting and running around and trying to figure out who will watch the kids and take me to appointments. Ahhhhhh! It makes me so frustrated I want to scream!

Jen

[BJSaws]

Hi Jen,
     This is just my opinion.  You have to do whatever you feel is right for you.  That said, I would see the doctor at Penn for a second opinion if at all possible.  If the doctor at Penn deals exclusively with breast cancer, he may be more up to date on the latest treatments.  I chose to go to a regional cancer research center even though it delayed my surgery and treatment.  I personally felt that a surgeon and oncologist at a Breast Center would be better able to treat me than a general surgeon/general oncologist locally.    Breast cancer treatment is changing on an almost daily basis, so I wanted the most up to date treatment.  Even now, 4 1/2 years later, my treatment would be different than it was just because things are evolving so rapidly in this field.
     So far as your mental state goes, your reaction is perfectly normal.  Although I was older than you when diagnosed (57), I would still cry every time I saw or even thought about my daughter and 3 grandchildren.  I, too, was consumed with thinking about breast cancer.  The only time it wasn't on my mind constantly was when I was at work.  
     I had CT scans, bone scans, a MUGA scan (for heart function), blood work that left my arms black and blue and felt like I was in a fog while all of this was going on.  I felt like it was happening to someone else and I was just an observer.  All of this could not possibly be happening to me.  The day I went to the doctor to get my results, I burst into tears before they called me back.  I told my husband I knew the tests would show that I had cancer everywhere.  When the doctor told me all the tests were clear, I once again burst into tears...I was so relieved.  I cried more from September (when I was diagnosed) until April (when I finished my chemo) than I had cried in my entire life.  I found that the more supportive and nicer people were to me, the more I cried.
     Hang in there, girl, this, too shall pass!  You will get through it even though it will test all of your resolve.  You will not only become stronger, you will become more compassionate and more appreciative of every day.  Although it has been a while for me, I still think of every day as a bonus I have been given.  
     My thoughts and prayers are with you.
Brenda

[traceyz]

Hello there Jen,

Okay. Where do I begin. I am her2+ as well, so we have that in common. Thank goodness for herceptin. I will start that along with the taxatere on the 18th of this month. Do you know if you are estrogen or pr+. Those results will also determine your course of treatment. I do agree that its good to get a second opinion. I think the reason my doctors choose to do chemo first was because my tumor was 3cm and they knew i had atleast 1 node involved. So chemo was first for me.

Jen sweetie you dont have lung cancer and yes the test are scary. But you are gonna be fine. My sister is outside waiting for me so im gonna message you back in just a few hours. But I understand your fear because I deal with it everyday. I am so scared to get a ct scan, because I have muscle twitches all over and in my sick little mind it's in my brain, but my surgeon and oncologist dont think so. So i say all that to say I understand your fear, but you are fine and so am i.

I will get back with you in a few hours.

We are gonna get through this Jen I promise.

Your sister,

Tracey

[Irishgal2]

Well I agree with all the comments, go get the second opinion.

Ok so you are Her2+ and herceptin will do the trick for that.  You can only go onto Tamoxifen if your are ER+ or PR+ otherwise it has not benefit.Has that been confirmed?  Also did they give you a grade for your cancer i.e. 1, 2, or 3?

Lymph nodes involvement is very important to know before your treatment begins so you know exactly what you are dealing with.  I though the doctor would have wanted this result before starting chemo.  I know in Ireland if you are node negative like I was, I only needed 4 cycles of AC.  If I had any nodes positive then I would have had to have the Taxotere afterwards, but thankfully did not need it.

So a question I would ask is why that amount of chemo when you do not know the lymph node status yet?

The tests are frightening, I was really scared as well, but you need to know the full details and extend of the cancer.  I too was a on/off social smoker and like you I panicked about lung cancer.  If you have cancer in the lung, which I am sure you don't, it will not be related to smoking as BC is the primary source, or so I understand from your posts.  I asked this exact question of my Oncologist and that is what I was told.

You will also need an ECG and Echo on your heart before chemo as well.

I'm thinking about you and you are doing great.  It is a lot to take in in such a short space of time and then chasing results etc is adding to the stress, but I think it is important to get the second opinion.

[Greta_L]

I really think that mentally you are going through the hardest part, so many decisions to make, so your reactions are perfectly normal.  When I was at your stage, some wonderful "Survivors" at my office took me aside and encouraged me to go to go for a 2nd opinion at the regional University Hospital that has a specialized Breast Center.  Like you, it was a mad scramble pulling together records, but if your first doctor is good, he'll understand the need for a second opinion, he'll also understand if you want to postpone chemo one week while you get the opinion.  Don't worry that you might "offend" him, this is about you not the doctor.  The second opinion really helped me feel much more confident in my decision when the two doctors agreed.  In my case we weren't able to get all the cancer with a lumpectomy and I had to have a second surgery for masectomy and reconstruction, so I was glad I had gone to the bigger hospital. I had all those same tests and the CT and MUGA too. Another thing about the regional or University centers is that they may have different options for Chemo based on studies being conducted there.
I know your anxious to get started, but take the time for the 2nd opinion and you won't have to wonder later if you did the right course of treatment.  You can look back and say "I made the best decision I could based on the best information I could get at the time. "
God Bless, Greta

[Ray515]

Don't EVER apologize to ANYONE about wanting your records and more information or a second opinion.  I sort of understand the chemo before surgery in that your tumor isn't considered small. The chemo will shrink it.   Did you look up the National Comprehensive Cancer Network as per my earlier post?  There are guidlines in there for presurgery chemo (neoadjuvant treatment) and when they are usually used.

The HER2+ status means that your cancer tends to be more aggressive and more likely to recur, as is mine.  However, it also means that you can take Herceptin and this is a fantastic medicine.  It targets the HER2+ cells so there are few side effects, and I was recently told by an oncology nurse that this medicine is sooooo helpful that the medical field considers the benefits to far outweigh the heart risks.  I will be on it once a week for a year.

I am on Cytoxan and Taxotere so I can help you with those side effects if you would like.  Check out chemocare.com and you will learn all about the chemo drugs you will be taking.  You will lose your hair with this treatment but it will grow back.  Mine started falling out last Wednesday and I finally had it shaved on Sunday.  I took my 10 year old in with me and we had a little fun with it.  We had the hairdresser give me a mohawk first!!  My 10 year old kept it light and fun.  And now I am looking good in scarves.  Line up some scarves now.  The American Cancer Society has a lot of nice ones and you can see them online at www.cancer.org.  You are a little too close to diagnosis to have any fun with it yet but it will come, I promise.  

Look up all the information you need and learn everything.  And then, just a suggestion, put it all away when you know what you need and pick up a mystery or sleazy romance novel.  You can't live with the cancer continually.  You will need a distraction for your mental health.

I wish you and your family the best.  You aren't the first to go through this and unfortunately you won't be the last.  You will survive this and that will become more clear to you but it might take a few weeks yet.  There is light at the end of this tunnel.

[Gardini]

My wife had chemo first because of the size of the tumor. If you go for a 2nd or 3rd opinion, be sure it specializes in breast cancer. I am sure that there are wonderful facilities around Philly. I can tell you absolutely, the Womens Breast Health Care unit is cutting edge and top notch. It may be a long way  to go, but for an expert opinion, it is worth it. If you want to explore that ask for Dr Kass, she is a wonderful surgeon.

Just a reminder: Start a notebook, and have all this written down, it will help you along the way. You will do fine, enjoy each day and those wonderful children.
Gardini

[Jen1967]

Thanks to everyone - I still can't wrap my mind around all this. I'm trying to stay strong - but all I can think of is not being around to watch my kids grow up. Today I made alot of appointments for almost all of next week ending with an out patient surgery for the lymph node biopsy. So yeah-Annette - I dont know why they told me all about what kind of chemo I'm getting if they dont know that status. But I know I have to what a week to heal from that to start chemo.

I have an appt with the other oncologist in Philly. My husband said he would drop off my films over there tomorrow - so the dr can review them before Tues appt. It cant hurt to see another dr like you all said.

I haven't looked at the NCCN yet but I will - I understood what the dr was talking about yesterday with killing off all the other cancers in me and shrinking the tumor. But boy - I am in for a long haul. Seems like over a year of treatments of some kind.

I can't seem to think about anything else. It's awful. Out anniversary is this weekend and we are gong out to dinner and a movie - but I really don't want to - I'm just as content to stay home and hibernate. I feel like I have to make myself go out. I have to make myself do other things. My husband wants to get my mind off of it I'm sure. But there isn't anything that will. I am just so sad.

I keep saying to myself this too shall pass. Dear God I hope so. I love all you sisters out there. You have taught me so much in such a short time. You have shown me your courage and strength and I wish to be like you.

I'll keep you updated

Jen

[LizM100]

I'm sorry that have been diagnosed with breast cancer. I too am a mom of 3 young (1yr, 6yr, & 11yr old) children who was diagnosed in January of this year. When I was diagnosed my youngest was 8 months old and all I could think of is if I was going to be around long enough for youngest to remember me. I even had a difficult time looking at him without bursting into tears but time helps and you start to think less about breast cancer.  Remember you have it, it does not have you.... You are the one taking control and you will be OK.  Research with breastcancer has come a long way in the last few years also most of the information on the web for Her2+++ is outdated.  Herceptin has changed history for those who are Her2+++ it is truly a miracle drug.  There is a wonderful support forum where you can learn alot about being Her2+++ and meet many who are Her2+++.  The website is www.her2support.org it is only for those who are Her2+++, the members are warm and supportive.  Best wishes and stay strong for your children.  Liz

[frustratedrg]

Hi Jen.  I feel like crying with you.  I KNOW how you feel.

When I was first diagnosed, I remember how sad I was and how much I cried and how I too didnt want to go out or do anything.  I felt like the whole world was fine and I was not.  I didnt have patience for people complaining about small stuff and I still dont. People have a weird way of complaining about the most ridulous things.

I'm very scared for my upcoming biopsy but this site is amazing, very supportive and it shows how much people care.  I believe we are all rooting for each other and when one of us hurts, we all feel it.

I agree with everyone who mentioned a second opinion.  Some treatments are cookie cutter treatments and others I believe can be changed.  If you speak to someone else you will know if they agree.

Get some rest and take care of yourself.  Love, rhonda

[HazelLynn]

Hi Jen,

I just wanted to say that I have been thinking of you too and praying that things work out for you.  I dont know about the chemo side and your particular cancer, but I do know about the children - I have four and they have been so supportive and caring throughout this, keep cuddling them and telling them you love them we must be strong and positive for the children (and of course ourselves).
Best wishes,
Hazel

[FJW]

Hi Jen,
   I have been following your posts and found a site you might be interested in.  It allows you to check the accredidation of treatment facilities.  I thought you might like to have it. http://www.acr.org/
I was surprised to find that the facility that I was using is not on there for some of the studies I was having done.  I recently switched to an out of town imaging center.  I can tell you that the drive does get old, but it is well worth it when you drive away with the peace of mind (knowing that you have gone to the best place available to you).  I wish you all the best and my prayers are with you and your family.  Gob Bless

[Jen1967]

Thanks so much for that website - I just looked and found that the hospital I went to Tues -where all the drs are that are treating me- isn't on there.

I just got a call from a nurse coordinator at Cooper where there is a breast care center. It turns out my sister is friends with an oncology person and she told her about me. I had talked to this nurse last week and yesterday - but I was so spent yesterday with all the appointments I had to make that I couldnt bear to make another appointment. So after talking to my sis's friend she called me again and I felt like it was a sign from God. I think these are the people I should be dealing with. Not that there is anything wrong with the first drs I saw but for some reason I just got a really good vibe. Cooper has a breast care center and I found another woman who recommended them too.

I woke up this morning with a knot in my gut but now I am feeling a little more relieved after talking to the nurse. I ran around today picking up slides and dropping them off to my husband who then took them to Philly so we could meet with another oncologist on Tues. Next week is packed with test appointments too.

So wish me luck - I know you all do

Thanks sisters
Jen

[Irishgal2]

You are doing super, as if looking after 4 kids is not enough, now you are like a headless chicken making appointments and rushing everywhere.  But like all before me have said, you are making the right decision getting a second opinion.  The rushing around will be worth it.

The treatment will take about a year, but if you live to 83 years old and have a blue rinse in your hair and walk on a stick, what is a year really!  That is how I picture myself, oh yeah, and I would be a contankerous ould biddy as well!!

So you are 10 years married, I think that is worth celebrating in some way.  Maybe you are not up to dinner and the movies, but do try to do something to mark the occassion.  Why not have a family day instead doing something fun for the annivesary like bowling, skating or something and then all the family have a meal in a kids friendly restaurant.  I think the whole family deserve a treat, none more than you, with the week you have had.
Just think about it, it sure beats sitting at home on the internet reading about cancer and more cancer.  You need to take a break from the Breast Cancer, even if it is just for one night.

Personally while is was going through my treatment, I was raring to go for girls nights out or family days out, because I left my BC at home and became me again.  

Keep going, you are doing great.

[frustratedrg]

wonderful advice.  Taking a break and going out can really make you feel as though you are "me" again and if seems to give you a boost to go on.

I was just wondering, when did you go through all of this?

[lizziecee]

Been following your thread and wish you well.

Just a note - you can only have Herceptin in conjunction with chemo or for 12 months afterwards, according to my Oncologist. I was not tested for HER2Neu when dx in 2003 and when I went privately for this test (NHS socialised medicine in England), although I was treated  at a breast care centre of excellence, he told me I was too long out of chemo (6 x FEC) to have Herceptin. HER2Neu tests are the norm now I believe. Luckily I was HER2- - a real blessing.

Because of the size of your tumour, I believe also that neo-adjuvant chemo is the norm now, and indeed was 6 yrs ago here in England, when my hairdresser was dx with a 6 cm tumour and had neo-adjuvant chemo, then lumpectomy, chemo and rads, as I did.

Jen - I am retired, with intractable Crohn's, which was exacerbated by having to stop my normal chemo, and I was the original woman "under the duvet". Felt so guilty about not being able to cope....but there are times when you just have to take care of yourself. I found the support I had from neighbours whom I barely knew, was incredible. Didn't need food, as my husband can cook, but needed help with transport to the hospital which is some one and a half hours away, by car and ferry. Hubby is 80 yrs old, and not able to drive in the dark. Take whatever help is offered - no matter how small - let people help you, most good friends don't know what to do, so tell them.....viz: "I need help doing the laundry, ironing, cooking, cleaning, baby sitting the kids,etc" ...if they are true friends they will be there for you, but it is no good just saying: "Okay" - you have to tell them what you need and they are only too happy to help out.

Take care, it's late and am bushed. Good luck with your tests.

Liz, in Cornwall, England.

[Irishgal2]

Just replying to your post.  Sometimes it seems like a lifetime ago and then at other times as if it was only yesterday.  I was diagnoised 19th March 2007 aged 39.  I had 8 months of treatment and finished on 19th November 2007.  I had a lumpectomy, full level 1 and 2 axilia clearance, 4 cycles of AC Chemo and Radiotherapy.  I have been on Tamoxifen since November for 5 years.

When I was diagnoised I found this site a wonderful support for me with many kind words and help from fellow survivors, husbands etc.  I promised myself that I would stay on the forum for a year after my treatment finished to see if I could give support and encouragement to newly diagnoised women with BC, just like so many other women helped me last year.  

At the end of the day we are all ordinary women helping each other and yet in some ways we are each extraordinary, we find so much strength within ourselves and get through a very difficult time which I suspect most of us never though we would get through.  But we did as too will Jen and many more newly diagnoised women.  

What is your situation?

[Jen1967]

You all are so great to write to me.  I am trying to stay positive - just hoping all the tests come out ok. Im a little nervous about the node operation but after all the c-sections I think I can handle it.

I'll write soon

Thanks all

Jen

[frustratedrg]

One thing Im confused about - how long are you on tamoxifen if you were diagosed in 2007.

My story is a saga.  In November 2001 I had 5 biopsies.  One was cancer (a lump) the others were suspicious calcifications - turning out benign.  
I had a second surgury for the sentinal node - all clear with lumptectomy.   I went on to have 6 mos. of chemo (CMF) - not too bad.  I then had my very first mammo after 6 mos. and they found another cluster of calcifications.  Had another surgical biopsy. It was benign.

I then had 6 weeks of radiation.  After about 1 yr. after radiation, I found a red lesion on my radiated breast.  Had a biopsy.  Had a misdiagnosis from the lab.  They claimed I had an aggressive vascular tumor due to the radiation.  I had to schedule cat scans.  My dr. felt she wanted a second opinion due to the serious nature of this diagnosis.  I thought at that time my life was over.  She proceeded to have the lab send my biopsy speciman to NY Presbyterian Hospital.  After much anguish, one week later she called with amazing news.  She said the head of the breast cancer department and the head of the dermatology dept. concluded it was just a normal lesion - not life threatening.  AFter that my dr. wanted a third opinion and sent it to a prominant retired dr. in Italy who used to head Mt Sinai.  After 1 more long week, He too agreed it was fine.

About 2 yrs. after that my mammo once again showed a suspicious linear cluster of calcifications.  Had a biopsy.  It was benign.

This year, 6 mos ago after examining me, my dr. felt a lumpiness and took a needle biopsy.  again, benign.

and Now, in 1 week, I have another biopsy scheduled for another cluster of calcifications.  Apparently, I keep developing more calcifications.  and because ive had breast cancer they would prefer to biopsy them instead of waiting and watching.

So, you see although this should be behind me, it unfortunately is not.  If this or any future biopsy is not o.k., I will need a mastectomy.

Ive been on tamoxifen for 5 yrs. and now femara for 3 mos. so, hopefully, its doing something.

[traceyz]

You are amazing, and I know you are gonna be fine. This is just a small bump in the road. But when it's all said and done I know that you WILL get this behind you.

And Jen, chin up kiddo this to shall pass.
Hang in there and I will be praying for you.

Tracey

[Irishgal2]

A saga is right, poor you, I hope there is an end to it all soon.  Biopsies are not nice but I guess it must be the constant worry that is the hardest.  It must be hard not to get down.  You sound like strong person, but I wish you got a break, you deserve it.

I can understand how it is not behind you, but hopefully some day it will be.

I started Tamoxifen in Nov 2007 after my radiation.  So far no side effects of any significant, but afraid to say it too loudly in case I jinx myself.

Let us know how the biopsy goes.

[LisaMarieLN]

i have never written you before but wanted to say so sorry to hear the bad news, hang in there, we are all praying for you. i can tell you from experience that a wonderful cancer center in philly is cancer treatment centers of america. you can even chat with them on-line live or, via email. they treat cancer, and cancer only. if you jump up in the middle of the night and have a question they will answer it live. i have attached their web address, check  them out. i don't want to dole out advise, i'm not, i just know a couple people who lives were saved through them. i live in so jersey as well. hang in there jen!
http://www.cancercenter.com/

[darcytwin]

i am also on tamoxifen for the next five yrs....the ONLY side effect that ive noticed is ....ready???...........GASP........facial hair......yup, a nice peach fuzz on the sides of my face....do i wax it? or leave it alone??? i dont want it to grow any thicker OR longer...

ive been pretty body hairless my whole life....so this is a new and interesting development.....with my newly growing in SHORT GREY head hair and peach fuzzy facial hair, wonder what else is going to grow?? a male part??????? sigh...lol....laugh darcy laugh!

[Jen1967]

Hey - I took your advice and bought 2 wigs - online. I hope they are nice. I cant believe how much the human hair ones are! Uhg.

I am a hairy girl - I hope I dont grow a mustache! I have so much to pluck right now - I keep thinking that when my hair falls out that will be one less thing I have to do.

Im trying to see the humor! But I dont think I can yet.

Jen

[katarina777]

I was diagnosed exactly the same time as you last year, and I also started with chemo. About the hair thing. First of all it's summer, and that is good. It's really true what they say about babies and them losing a lot of heat through their heads. It felt really good never having to worry about any hair sticking out anywhere, and it feels great to have the water from the shower run over your head, and you don't have to comb and dry it. I made the hair loss thing a little ceremony with my kids, and they helped to pull it out. It was funny. One night I had a dream that I was losing my hair and that I started puling out chunks of it. The problem was that as I was pulling it out it never became any less on my head even when the trash can was overflowing. So, the next day I tried to demonstrate what I did in the dream for my kids, and out came chunks of hair. we pulled and pulled and as in the dream it seemed to never show. so, at one pint I told them 'this was it, and I was going to the store that night'. (and before my hair was gone) I did, and by that night it was all gone.

I never wore a wig because I just couldn't stand it, so I had my own designer hat, first for summer and then a warmer one, (ones) for winter.

It is a little scary but once you have it out, you'll be OK.

[katarina777]

One other thing. Although I was diagnosed with stage 3 bcd, I did not have a bone scan ahead of time. My oncologist argued that many people have micro-metastasis, and when they do, in half of the cases it does not show up on a bone scan anyway. This means that even if the results are negative you don't know if that is really the case. (with positive it obviously is) But since I was scheduled to have all this chemotherapy anyway, the oncologist said it did not really matter, since the purpose of the chemo in addition to shrinking the cancer was to wipe out any cancer cells that may be hiding around in the rest of the body. I should also mention that my cancerous lymph nodes did not show up on even the MRI. So it's good you are having a biopsy of the lymph nodes.

[Jen1967]

Hey Thanks Kat

Good advice for us all.

Jen

[frustratedrg]

Thank you.  Your words mean alot.  

I agree,  it has been a lot of worry.  But, this time I seem to be dealing easier.  I think everyone's kind words and the fact that most of you on this site understand and have been through an ordeal seems to make me feel as though Im not alone in this path

[frustratedrg]

Tamoxifen is pretty easy.  You should feel pretty good on it.  The only thing that really effected me was weight gain as I've always been thin.  I am a little under five feet and have always weighed around 90 lbs.  I am now up to 100 lbs. which is a little heavy for me.  Its body fat around my middle so most people still havent noticed the weight.  Youc can kind of always suck your stomach in.

Im now on femara ( 3 mos.) which so far isnt bad either.  Pretty much the same, but they say it causes a lot of aches and pains.  I havent noticed it yet.  

Hope you have an easy time on tamoxifen.  I think facial hair, though, is inevitable anyway.  I too have to keep plucking.

[darcytwin]

hmm...ive finally JUST lost all of the weight that i gained from chemo....i gained 19 whopping lbs....ive always been super thing too...110 since high school...so that really freaked me out....im down to 113...and i did it by drinking green tea (home brewed), it took about a month for it to kick in, but i swear its working (although my trainer says its because the steroids are leaving my system) ..i dont care, i fit back into my clothes...the tamoxifen hasnt seemed to make a difference in that regard, just fuzzy face........