It's definitely breast cancer

[Jen1967]

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

[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!

[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

[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.

[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.....???????

[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]

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!!

[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. 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]

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

[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.

[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

[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

[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

[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.

[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

[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.

[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

[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

[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.

[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

[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]

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]

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]

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

[traceyz]

Hello Darcy,

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

Tracey