Starting Chemo in JAN 2007

Hi everyone,
I was in away for a couple of days for some r & r. Trying to catch up on all the posts.
Welcome Caya and Mrs. Shey.

FYI: Second opinions are imperative!!!!!!

On Friday afternoon I got a phone call from my radiologist with some disappointing and concerning news.
A little history first: I was diagnosed on Nov 27 with IDC, 2.5 cm, grade 3, er+, pr+, Her 2 neu +, and negative nodes.
MRI showed two other areas of concern on same breast.
Surgery (lumpectomy) on 12/11. While under,surgeon froze other two areas to try to determine on spot if they were malignant. Surgeon had my orders to give me a mastectomy on spot if they were malignant. Pathologist could not tell, so had to send them to lab.
When results of pathology report came back on 12/20, other areas of concern came back as benign. One area showed ADH,atypical stuff that they just watch.
I went to Dana Farber on Jan. 3 for 2nd opinion. They asked for all my info to be sent to them and also all my slides from my pathology reports. Unfortunately the results from their pathology reports were not ready before my appointment. The Oncologist from DF told me she would let me know if their results were different from my hospital's report.

Started A/C treatment on Jan. 25.
Got call from my radiologist- not Dana Farber on Friday- two months later.
Doctor told me that Dana Farber's pathology report differed from their original report.The doctor told me that she got the phone call from Dana Farber last week. Apparently, one of those areas of concern was indeed DCIS. OOPS!!!!
My hospital ran the results again and this time agreed that Dana Farber was correct.
What this means to me is that I had two cancers in same breast, different quadrants. If they had known that before, I would have had a mastectomy.
She now tells me that I should have a mastectomy as soon as my treatments are over because now I have increased my chances of recurrence by 25% if I do not have a mastectomy.

Questions I will have for Dana Farber: When did they know my results?
Why wasn't I informed?
When was my hospital informed?
Why wasn't I informed?????
They had more than 3 weeks between when they received my reports- Dec. 30 and my first chemo treatment- Jan 25.
Usually one had surgery first- then treatments. That option is gone. This kinds of stinks.
I am very grateful that Dana Farber did catch this mistake. Now at least i can take care of this matter by having a mastectomy. I could have been walking around with a 25% chance of recurrence without even knowing, and all these treatments for not. I just wish they called me. I was the one that went to them for a 2nd opinion. They could have told me the results.
This confirms the value of second opinions.
I know this is long, but I guess I am just venting. thanks for listening.

We had a good weekend here. Great weather yesterday in the high 60's. My daughter's big 6th birthday party was on Saturday with all of her school friends. It was the first time I had seem all of the moms from her class. It's a small school so everyone knows. Anyway, no pity looks or stares, everyone was just nice and acted normally. Even the kids. I was pleasantly surprised.

I started coming down with a cold on Friday have felt very drained all weekend. I was glad I made it through the birthday party. I haven't made it off the couch today except to go upstairs for nap. I'm glad Mizsissy posted the question about chemo and being sick. I've been wondering the same. I guess I have until Friday to try to feel better.

Here's hoping for a good week for everyone.

Viddie thats awful...and yet at the same time good. I am glad that you went for the second opinion, and even though it took a roundabout route I am also glad that the info made it back to you. It absolutely SUCKS that you have to have another surgery as a result, but at the same time since the questionable area was still "in situ" it does not set your treatment back, or impact on its effectiveness. You have made absolutely the best decisions that you could make given the information you had. Never, EVER question those decisions or even consider the "what if" because you will drive yourself nuts. Move forward, and you will heal.

Oh my Viddie! I cannot believe that. However, two things that pop into my head: 1) You can still do something about the surgery and thank goodness you went to DF for a second opinion, and 2) You will have this dreaded chemo over with sooner rather than later. You'd still be in the beginning of chemo or waiting for it to start had you gotten the mast first.

I'd still want to know why the hold-up in telling you though and why you weren't informed directly.

Isn't is amazing how different hospitals/labs can get different results? My path report from DF was different and now I am not getting Herceptin. Neither of us would've know the difference had we not gone there.

Amera

Hi Everyone,
Viddie, I am dumbfounded at what you have been through, you sure have a right to vent and this is the place to do it. Thank God they caught the mistake. Mizsissy is right about investigating the holdup in telling you. Robertin, have a great day at work, and why not get a handicapped tag? We certainly fit that definition right now. Jan hope you can feel better soon. As for me, I've been researching the Taxol question and do feel better having looked at study results when given with Herceptin, plus have explored the side effects and it sounds manageable if your nursing staff is alert. So I will be going ahead as planned next week. Off now for weekly blood counts and maybe finally making it to wal-mart, my goal of the week! Blessings - Skye

Mizsissy, good luck today! I am *pretty* sure that today is your LAST one! Hurray, Yippie and Wahoo!

Today is #3 of 6 chemos and I am so looking forward to it being over so that I can...well...be half-way done!

I hope everyone has a good day today, I will probably be afk from this site for a few days but I expect to see lots and lots of GOOD updates here when I get back!

/hugs to all
Susan

Quote:

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Question: are all of you having that yucky smell sensitivity? I cannot stand it. I have opened the windows in my house (it's only 40* outside) and cannot, cannot get the smells out. Everything is making me feel sick. I cannot launder clothing, I cannot wash dishes, I cannot stand the smell of my cat. Blech! That and the nasty taste thing is doing me in. I finally feel *okay*, not great by any means, but these other things...I've about had it. I want my life back!!! Waaaaaaaaaa!
Amera

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Yup, add it to the list of reasons why chemo is similar to morning sickness!

I found that for the yucky water thing that the only drink I could stand was Tang. Strange, I know, but it actually tastes good for the first couple of days post chemo.

I'm off to get things done before my chemo at 1pm!

Susan

Hi,
Susan and Mizsissy, good luck with chemo today.
Susan- Congratulations with your 1/2 way mark!!
Skye, How often will you be taking taxol and for how long? When will you be starting herceptin? Will you be getting them together? I will be on the same regime, but I have not investigated it yet. I will not be starting that stuff until April 19. Since you will be ahead of me, I will have the heads up on the s/e et al, thanks to you.

Robertin, a handicapped tag seems like a very good idea. Universities are so large, and parking lots even larger. We should make it as easy as possible for ourselves.

Jan,
You sound like you are feeling better. Are you?

Viddie - I'm feeling almost normal this week. My next chemo (#3 of 6) is on Friday. So it should be a good week.

Amera, I've had that smell problem from the beginning. I remember the very first week of AC everything smelled like stale shrimp. The smells vary since then but it seems I'm always sniffing something weird. Musty old attic was the last.
Viddie, I'm starting Taxol next Monday, four doses, one dose every two weeks. I won't be getting Herceptin on the same days as the Taxol, but simultaneously, and then continuing on for a year. I am not looking forward to sitting in the chair for 3 hours but that's the only way to do it. The nurse told me today they give the first infusion more slowly than the others in order to watch for reactions better. It amazes me how the learning curve never ends! - Skye

Well, the nurse called and said that for sure I would get the handicap tag. Especially, she said, since the legs will hurt more during Taxol. That's okay, I can handle pain, there's lots of painpills out there. Just don't give me any more nausea and yucky taste in my mouth. Hey, I'm at the university, bald as an eagle, and so far nobody has fainted yet I did talk to a researcher at Goddard to discuss teleconferences. The poor guy had a hard time mentioning my condition, the uhm.... you know.. uhm... Oh well, he's young, and single. Just be blunt. I can handle it. Feel much better being out of the house.

I've had my 4 AC txs, and on Friday I had my first Taxotere. Here's my story. It's a little personal so if you're not up to that, keep reading, friends.

The txs have really done a number on my GI tract. Now very minor hemorrhoids that have been present without any issues for years (from pregnancy days) are all irritated and my bum hurts! There's been a little bleeding but not enough to effect my lab results.

But it's like the marinade exits my body through my rectum and it's miserable. Like soft puppy poop that burns on the way out.

I'm trying to be gentle with my hygiene, using Tucks pads but I dread the urge that leads me back to the bathroom. I cringe, my eyes tear up and I just think "Isn't it all enough what's already happened - does my butt have to get involved, too?!?!?!"

Sorry ladies, just needed to blurt this out - I haven't been able to share it with my daughters or friends.

Mizissy I LOVE your diploma - what a neat idea! And we will have to find other activities to fill the day. I go on Wednesday. Is your cold OK?
Iowacindy - maybe zinc ointment would help?
I've had a really weepy few days and I'm scared about Wednesday - don't really know why, except they had trouble getting the IV started last time. I'm a bit better today, though.

Fabulous, Mizsissy! Congratulations to you for getting through it.

You can continue to be our leader. Lead us out of the wilderness!

Good evening to all my beautiful friends. It's been a while since I've been on here. Been having a bit of the blues, dealing with other family issues.

l82jem thanks for the update on the rads.

Mizsissy congrats on your last Chemo session, beautiful diploma.

To all who has completed there chemo and rad, CONGRATULATIONS!!!!

Sorry to hear so many having such a hard time. Can't remember everyone's name and to much to go back and fourth. My prayers are with you.

I have a dilema regarding weather I made the right decision on not having Chemo, only because I could not afford that oncotest and my insurance probably won't pay for it makes me a little worried.

Here's my dx

biospy by lumpectomy Jan 8th
Dx Jan 15 with IDC
back to surgery on Feb 9th, lumpectomy to get clear margins and 3 lymph node removal.

results in the end:

IDC
Tumor size: .07cm
Histologic grade: 2 of 3
Nuclear grade: 2 of 3
Lymph node-neg
Margins-clear
ER+80% (positive>5%nuclear staining)
PR+80% (Positive>5%nuclear staining)
Her2/new (Fish) Negative; no amplification

Am I doing the right thing. My doctors said, with my final path report I will have the same results without chemo.

Thanks

Mrs. Shay