newly diagnosed

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Hi Sharon,

Congrats on doing well with your first chemo! I felt a bit better after I finished the first one. It didn't seem nearly so scary 'cause I knew what to expect.

I didn't have a port but I had pretty good veins (at least when I started LOL) I had the A/C every three weeks. They gave me Kyrtril for the first three days and it didn't work that well. I tried to get them to switch me to Emend (on the advice of other ladies) but they wouldn't. I'm VERY happy you have the Emend. Lots of ladies say it's great. It sound like you're in excellent hands!

What to eat? Whatever appeals to you. Here is a great site that gives information on keeping a good diet while on chemo: www.chemocare.com
My chemo nurses also told me to drink at least one of those high-protein drinks a day (I tried Boost). I didn't like it too much, but I "forced" it down because I knew I needed a lot of protein. Also, red meat is good for you. It will help you replace what you have lost. Just be sure your meat is cooked well-done. I had lots of nausea so it wasn't easy to eat. But I was near-underweight and they told me if I lost any more weight I would have to make special trips there for IVs. Well...that did it! I made sure I did not lose an ounce!

Yes, it does seem almost insurmountable - an incredibly long haul - but I really think it went by pretty fast! And now, as I look back, I really don't think it was that bad. And you sound like you're keeping a great attitude.

I'm glad your MUGA came out good, too.

Sharon, Happy Thanksgiving to you and your family. Take care and continue to do what you've been doing and you'll be fine.

Hugs,

Margie

Sharon · Posted: Mon Nov 22, 2004 1:35 pm Post subject: newly diagnosed

Dear Margie: As always, thanks for the response. The port is working fine and so are the meds. I did have to fight with the insurance to get the Emend covered however. It is expensive $350 each round, but, oh, so worth it. My mouth is a bit sore so am being deligent about oral hygeine and rinsing with soda and salt solution 4 times a day. I keep thinking of your words,,,,,, it isn't easy but it is doable.
I watched Elizabeth Edwards with Katie Couric last night on dateline. She has already started chemo. Her young children think it is something special that she will be losing her hair. Somehow it is reassuring to know that you are not alone and others have succeeded on this journey. Thanks for being there.
Wishing you and your family a most Happy Thanksgiving. We all have much to be grateful to and for. Hugs, Sharon

bobbiffxx · Posted: Sat Nov 27, 2004 4:09 am Post subject: Newly diagnosed

I am scared. Just had lumpectomy last week & have to have a masectomy next week. I have invasive ductal adenocarsinoma. Tumor is 3.5 cm. The pathology scores are high. I can't stop crying. I just can't believe this has happened to me. Are their any good support groups or someone to call?
_________________
Bobbi

Muttsmom · Posted: Sat Nov 27, 2004 11:48 am Post subject: Re: newly diagnosed

Hi Bobbie,
First, let me say that being scared is absolutely normal. All of us have been scared, overwhelmed and every other emotion possible and some we didn't know existed. When I had my mastectomy, and then opted for a preventative one, I didn't have a problem losing my breasts. To me, they were evil and trying to kill me and I didn't want them anymore. I've never once regretted having both removed and I had just turned 43 when dx. I was State III with a 5.5 cm tumor and 9 positives nodes out of 16 cancerous also. It will be 3 years on Valentine's Day that I was dx and I'm sitting here writing to you and I have no intensions of going anywhere Smile

What do the mean when you say that pathology report showed everything high? If you mean estrogen/progestrine receptors, that's a good thing. You're more apt to repond to Tamoxifen or Arimidex, depending on your age and menopause status.
You said you had a 3.5 cm tumor and now you'll have to have a mastectomy. I'm assuming that means they didn't get clean margins? If you can give more details, I think we'll be able to help you better. You are welcome to e-mail me if you'd like, or post and we'll be able to help more.
Hugs
Nancy

MACE1610 · Regular Joined: 27 Nov 2004 Posts: 23 Location: FLORIDA

I ALSO HAD INVASIVE DUCTAL CARCINOMA IN 2002. I LOST MY MOTHER TO BC IN 1978. I HAD ALWAYS THOUGHT THAT IF I WAS EVER TOLD THAT I HAD BC THAT WOULD BE THE END OF ME THAT I WOULD GO NUTS ON THE SPOT. YET SOMEHOW THAT DID NOT HAPPEN. AT THE TIME I GOT THIS STRANGE KIND OF CALM ABOUT ME. I BELIEVE IN GOD, BUT I AM NOT ONE THAT PRAYS ALL THE TIME OR EVEN GOES TO CHURCH ALL THE TIMES AS I MAYBE SHOULD. ALL I CAN SAY IT THAT DEEP DOWN INSIDE SOMEWHERE I KNEW THAT I WAS GOING TO BE ALRIGHT CANCER OR NOT. I MEAN IF THEY COULD REMOVE ALL THE CANCER OR NOT. I DID NOT GO TO PEICES OR ANYTHING LIKE THAT. SOME FRIENDS ARE STILL WAITING FOR ME TO DO JUST THAT. WHEN MY HUSBAND AND I WENT TO THE SURGEON AND HE STARTED TELLING WHAT THE CHOICES I HAD AS FAR AS A LUMPECTOMY OR A MAST. ALL I COULD SAY IS ARE YOU A GOOD SURGEON THAT KNOWS WHAT YOU ARE DOING. HE SAID YES AND I HAD ALREADY FOUND OUT THAT HE HAD A GOOD NAME AS A DOCTOR. WHEN HE SAID IT WAS A GOOD SURGEON I TOLD HIM I DID NOT HAVE TO THINK ABOUT WHAT CHOICE I WANTED TO MAKE AS FAR AS WHAT KIND OF SURGURY. I TOLD HIM TO THINK OF ME AS HIS MOTHER SISTER WIFE AND DAUGHTER ALL IN ONE PERSON AND TO DO WHAT HE WOULD THINK WOULD BE THE CORRECT THING FOR THEM TO HAVE DONE. I TOLD HIM I WAS GOING TO LEAVE ALL OF THE CHOICES UP TO HIM AND A POWER HIGHER THAN EITHER OF US. I HAD A LUMPECTOMY WITH RADIATION TREATMENTS AND NOW I AM ON ARIMIDEX. I AM GOING GOOD NOW, JUST HAD 2 YEAR CHECK UP. I DO HAVE MILD LYMPHODEMA BUT I CAN LIVE WITH THAT. I HAD ASK MY RADIOLOGIST AT WHAT POINT I COULD SAY I WAS CURED OF THE CANCER. WHEN MY MOTHER HAD IT THEY USE TO SAY IF YOU MADE IT PAST 5 YEARS YOU WERE CURED. THIS IS WHAT HE SAID TO ME, SOME MAY NOT LIKE THE ANSWER BUT FOR ME IT WAS THE ANSWER I GUESS I NEEDED BECAUSE I UNDERSTAND WHAT HE MEANT. HE SAID NO ONE IS EVER CURED FROM CANCER UNTIL THEY DIE FROM SOMETHING ELSE. HE THEN WENT ON TO SAY THAT THE GOOD PART IF ALMOST ALL DO DIE FROM SOMETHING ELSE THAN CANCER.

OH WELL I GUESS I HAVE GONE ON LONG ENOUGH. JUST HAD SO MUCH ON MY MIND THAT I WANTED TO SHARE.
_________________
HAVE A WONDERFUL AND SAFE DAY

bobbiffxx · Posted: Mon Nov 29, 2004 2:14 pm Post subject: Re: newly diagnosed

Thank you both for your stories, they help me. Since the day I was told my mammogram was a 'Birads category 5' I have felt like I was handed a death sentence. I can't shake it no matter what. I am not a pessimest. I am always looking on the bright side of everything & I'm the one that is always helping everyone else & keeping them up. It's just this feeling that I have. But I hope I'm wrong. I'm only 43, with 3 kids, & I've always loved life.
_________________
Bobbi

MACE1610 · Regular Joined: 27 Nov 2004 Posts: 23 Location: FLORIDA

HELLO AGAIN,

I ALWAYS WAS A PESSIMEST UNTIL THIS CANCER THING HIT ME. I CALL IT A CANCER THING BECAUSE I WILL NOT CALL IT AN ILLNESS. I KNOW THAT IS IT VERY HARD NOT TO WORRY, BUT IF YOU CAN TRY VERY HARD TO JUST TAKE ONE DAY AT A TIME. STRESS IS NOT GOING TO HELP YOU AND NEITHER WILL THE WORRY. TRY TO RELAX AS BEST YOU CAN AND HAVE FAITH. FAITH CAN AND WILL CARRY YOU A VERY LONG WAY IF YOU JUST LET IT.
_________________
HAVE A WONDERFUL AND SAFE DAY

Muttsmom · Posted: Mon Nov 29, 2004 6:04 pm Post subject: Re: newly diagnosed

Bobbie,
I had no idea what birads were, but I looked it up and from what I'm reading, 5 is the best you could hope for. I could be reading it wrong, but I read 1-4 and 5 sounds real iffy as far as anything definate as the others talk about cancer cells etc.
Here's what I copied and paste about it
BIRADS category 5. – ARTIFACTS – including skin contaminants can be misinterpreted as microcalcifications. Scratches on the film or screen dust particles, nail polish, air bubbles during developing process or dirt on the rollers of the developing machine may all produce artifacts. Skin ointments, talc or other powders, dry deodorants, tattoos, or rubber adhesive on the skin, all cause artifacts that may be mistaken for intramammary calcifications.

If we didn't worry, I think that would be worriesome. This is scary, no 2 ways about it. The word "cancer' has always been the scariest word to me in the English language, long before I was dx. BUT, it's not what it use to be. I've not been around long since I was dx a little less then 3 years ago, but I know ladies who's mothers are 25, 28 year BC survivors and back then, it was a radial and that was it and even with that, look how long some have made it. I personally have no intensions of going anywhere anytime soon. These overwhelming feelings will ease up, I promise. You'll find yourself talking about, you gotta find your boob and put it on and things like that. Humor, in time will get you through this. Right now you're in the scared stage, but you will get to the anger at the disease stage and then you'll be ready to kick some cancer butt!!!
Nancy
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

Anonymous · Guest

Hi, I was diagnosed with DCIS in May and had a partial mastectomy (lumpectomy) in June. No radiation. Doctor felt that they had good margins. However, there were no margins. Pathology could find no dcis, but they went back to original biopsy (sterotactic) and confirmed dcis. It has been bothering me ever since that they never could locate the dcis. I've been given various reasons, "got it all out in biopsy", "cut through it on pathology". A month later I came down with Mondor's Syndrome which is plebitis in the chest. I have not felt the same since. I am returning in Dec for another mammogram and I have a lump in the same breast but in a different location and feel paranoid. I was told I have extremely dense breasts and do not feel confident in the mammogram results, however, they did locate the dcis. Anyone else experience anything like this?

MACE1610 · Regular Joined: 27 Nov 2004 Posts: 23 Location: FLORIDA

I THINK DOING WHAT NEEDS TO BE DONE AND STAYING ON TOP OF THINGS IS A GOOD THING. YES WE WILL ALWAYS BE CONCERNED ABOUT THE CANCER OR IT COMING BACK. WHAT I MEAN BY DO NOT WORRY IS DO NOT LET CANCER DRIVE YOU CRAZY WORRYING UNTIL YOU DO NOT ENJOY THE LIFE YOU DO HAVE. WORRY CAN DO ALOT OF DAMAGE TO THE HUMAN BODY JUST AS CANCER CAN. NEVER LET THINGS GO UNCHECKED OR DO WHAT YOU NEED TO DO TO GET THE VERY BEST CARE YOU CAN FIND. JUST REMEMBER TO STILL FIND SOME JOY IN YOUR LIFE AND DO NOT LET WORRY KILL YOU WHERE THE CANCER MAY NOT KILL.
_________________
HAVE A WONDERFUL AND SAFE DAY

Sharon · Posted: Mon Dec 06, 2004 12:04 pm Post subject: newly diagnosied

Dear Bobbie: I am so sorry about your diagnosis. It is totally overwhelming. Hopefully, you are getting some answers to your questions so you can develop a plan. I have just finished my second round of chemo AC. It has been challenging but doable as all the other participants have suggested. This week is hair loss week. I can't believe how cold my head gets. I got a bad cold last week and was afraid that they wouldn't give me the chemo, but my counts were OK so we preceeded as scheduled. I am counting the days and treatments. My cold symptoms were actually more annoying than the chemo. It is difficult going through this treatment over the holidays as I cannot participate in much. I just take it one day at a time. I can be spontaneous. There will be more holidays later. Hugs,
Sharon

bobbiffxx · Posted: Mon Dec 06, 2004 4:37 pm Post subject: Re: newly diagnosed

well, I had a modified radical mastectomy of the left breast on Wed., Dec. 1st. I don't know how many lymph nodes he removed, because I have'nt seen my surgeon yet. I know that my arm is swollen & sore. Still have the drain tube. I will see him tomorrow. Then I will almost know my stage. (have'nt had the scans yet)
Losing a boob hasn't bothered me at all. I have always been so small that I never liked my breasts. No one can tell yet. I've been going out in public since the surgery. (It takes a lot to keep me down) I just want to know if it's spread to other parts of the body, what are my chances? Or are there any chances at all. My doctor seems to hold back on me. He tells me info but does'nt let me know how serious it really is. So every time I go back in to see him, he has bad news. He won't even tell me what stage he thinks I might be. He says he doesn't like guessing, & so I've been hanging for 4 weeks. will I start chemo right away? What is the usual amount or time? How much hair do you lose? Also shouldn't I receive disability? I am self employed, but I pay into disibility. Any info would be helpful!! Thank all of you,
_________________
Bobbi

Muttsmom · Posted: Mon Dec 06, 2004 8:50 pm Post subject: Re: newly diagnosed

Hi Bobbie,
My surgeon told my parents after my MRM that he removed all my nodes and quite a few looked suspicious, but he wouldn't know for sure until the path report came back.
I've seen small tumors with node involvement and large tumors without. I had both a large tumor and alot of node involvement, but it didn't go anywhere else.
The waiting really sucks because your mind goes in every direction possible. You'll know tomorrow what's going on and TRY, and I know that is just about impossible, to get your mind on something else and tomorrow will be here before you know it.

You're arm will more then likely always be a numby feeling. Be sure and do the exercises they told you so you get your range of motion back instead of scar tissue. I learned, after I babied mine because it hurt so bad, that the more you exercise it, the quicker the pain will go away.

Let us know what you find out
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

Sharon · Posted: Wed Dec 15, 2004 12:24 pm Post subject: newly diagnosed

Dear Bobbie and all: Hope Bobbie is getting the needed answers to the overwhelming questions, anxiety, and fears. I relaxed abit after the chemo started. I felt like I was "on the path". If hasn't been easy. I had a very bad week last week. The cold took its toll on my white count and hgb. I was totally exhausted and soooo sick. I started on Cipro on wednesday.. Then they were worried about thrush so I started Nystatin swish and swallows....my mouth sores were getting worse. I also started on GelClar to protect the mucus membranes. Last week was pure hell. But my strength after a shot of Aransep is coming back daily. I also went for some acupuncture yesterday which was a very interesting experience. A healing experience and a different approach. Today is chemo day....so I will be back at it. hopefully, my counts will be OK. the is grueiling but I am surviving. I now know more of what to expect. For those of you on chemo....stay healthy and away from sick people. I am taking a sabbatical from the holidays this year. I don't have the energy to do much. There will be other years. My animals are a great source of joy, love, and companionship as they sleep on my bed. I am getting lots of reading done. It is a good diversion. Wishing you all strength for the journey. In love and spirit, Sharon

Sharon · Posted: Mon Dec 20, 2004 1:08 pm Post subject: Re: newly diagnosied

[quote="Sharon"]Dear Bobbie: I am so sorry about your diagnosis. It is totally overwhelming. Hopefully, you are getting some answers to your questions so you can develop a plan. I have just finished my second round of chemo AC. It has been challenging but doable as all the other participants have suggested. This week is hair loss week. I can't believe how cold my head gets. I got a bad cold last week and was afraid that they wouldn't give me the chemo, but my counts were OK so we preceeded as scheduled. I am counting the days and treatments. My cold symptoms were actually more annoying than the chemo. It is difficult going through this treatment over the holidays as I cannot participate in much. I just take it one day at a time. I can be spontaneous. There will be more holidays later. Hugs,
Sharon[/quote]

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