New Dx. as of 6/21/07-ILC

Katiejane

I had a bi-lat. mastectomy on 6/21/07. The L breast was disease free and the R breast had the ILC with 3 lymph nodes involved. The tumor was approx. 1.5cm in diameter, clear margins were noted and I was ER+, PR+, and HER2-.
The bilat. was done at my request simply because I don't care to do this again! The ILC did not show up on the digital mammogram but was clearly visable on ultrasound.
The only reason the ultrasound was done was I had found a large lump in the R axillary area. I had been cleared by my Doc. 3 hours before by mammogram and breast exam results!!! He said I was clear to go for another year! Can you imagine where I would have been in another year without Dx.?
My oncologist has recommended 4 treatments of Adriamycin& Cytoxin, every 3 weeks without Taxol.I will possibly then move on to radiation followed by 5 yrs. of Tamoxifin. Does this sound about right to you? I begin chemo on the 17th of July and am very anxious as to how my body will react to the meds.. I was also wondering if anyone can guess how long this chest tightness & hypersensitivity under the upper part of both arms will last. Also, when can I expect my hair to start falling out?
Thanks for your time! Chattie

LizM

Hi Chattie, sorry you had to join us. I was diagnosed with IDC and ILC in fall 2005. My tumor was 2.1 cm and I had one positive lymph node. I had dose dense chemo (every two weeks) with 4 treatments of adriamycin and cytoxan (AC) and 4 treatments of Taxol for a total of 8 treatments over 4 months. I am surprised that your oncologist is not recommending one of the taxanes (either Taxol or Taxotere) after AC since you had positive nodes. Receiving one of the taxanes seems to be the standard of care for node positive. I also was ER/PR positive and took Tamoxifen for 3 months until I had an oophorectomy and switched to Arimidex. So far so good. Hang in there.

nash

I thought TAC was the standard of care right now, also. My onc is recommending that pre-surgery w/o knowing my node status, I think mainly based on age (38 at diagnosis) and tumor size on MRI (4.8cm). My surgery is July 19th. Ask your onc why s/he isn't recommending a taxane. Otherwise, everything else you're getting sounds like the standard treatment.

I've heard hair loss starts a couple of weeks after chemo starts. No way to predict how you're going to feel--everyone's different.

Haven't had my surgery yet, so don't know how long the tightness and hypersensitivity under the arms will last. I'd give it a few more weeks in your case.

Hang in there--sorry you had to join us. Good luck!

Katiejane

Thanks for your input. I will question my oncologist about the TAX. Good luck with your surgery-I will think of you on the 19th.

wallycat

I don't know about chemo---I was node negative with a 1.8cm tumor and tested a 20 on the oncotypeDX, which put me at low-intermediate benefit (showing 2% benefit for chemo).
I am on day 7 of Tamoxifen and the only thing I have noticed thus far is some joint pain. I hope I am metabolizing it as I hear all these hot-flash-is better stories and so am worried.

As for the tightness/recovery from the Mastectomy--mine was on June 13th and I think week 2 was the worst for me in terms of feeling raw nerves on and off pain and tightness.
This seems to have totally passed and each day it is better. I think I am about 4 weeks out now. There is still some fluid that my surgeon said the body will slowly absorb on its own. The worst for me are these "violin-cord" like things on my right side. My surgeon said this is because the SNB was done on that (cancer) side and the lymph network tries to redirect and it will all stretch out and work out. In the mean time, when I lift that arm, the tightness is very visible. I had the same thing initially (I first had a lumpectomy and SNB) with the SNB and it disappeared on its own after a few weeks. I'm sure this part will take a bit longer due to the degree of surgery.

Best to you!
Sorry you had to join us.

Katiejane

I agree that week 2 was the worst as far as discomfort. I believe the nerves are starting to regenerate if you will. The violin cords are a great way to describe how this feels and looks! I also have the fluid which fills the surgical area to the point that it rubs against the underside of my arms. I've had a needle aspiration x2 and that does relieve the problem. Eventually it will be such a small amount that the body will take care of it. Thanks for your input. It's such a good feeling to know you're not alone! Chattie

Anonymous

Chattie -
Bummer you had to join us, but your prognosis sounds very positive! I am curious as to why your Dr. isn't recommending Taxol...can you please let us know his expla nation? I had the violin cords too (it's also called Cording and Mondors Syndrome - if you don't already know this)! But in time, it will go away, hopefully sooner than later. Have you requested to see a physical therapist? They can show you massage techniques to help the fluid problem. Hang in there...you are processing alot right now. Take care, be well!

Katiejane

LauraGTO, I will let you all know what I learn tomorrow about the Taxol. I thought it was kind of the standard. I will be requesting PT--luckly I don't have the LE problem yet. The surgeon did take 23 nodes, expecting much more than the 3 that were positive. I will eat my standard breskfast tomorrow then I guess take something light for lunch. The anxiety is already starting to build-sure hope I can sleep tonight! Thanks for you support. Chattie

Katiejane

Well girls, I made it through my first chemo today. Other than the pre -treatment anxiety there was nothing to it! I was given Decadron & Aloxi before the infusion of the A/C. Overall the time frame was 1.5 to 2 hours. I even fell asleep-now they all know I snore!! I did take a 1 mg Ativan about an hr. before infusion. I'm pretty tired this evening-my husband says my skin color looks like Dracula has paid me a visit!! The stats on using Taxol as opposed to just going on to Tamoxifin post A/C treatments have the exact same out come with the type, grade,size of tumor, and positive nodes(3) that I have. Anyway, I'm so pleased it wasn't bad as I had expected. You all can get through this! I do understand that as I get farther into treatment it will really know me off my feet but hey, a small price to pay. Good luch to you all!!!! Chattie

nash

Glad to hear your first chemo went well. Hope you continue to feel OK!

Anonymous

Chattie -
The first one is soooooooooooooo scary. You did good though and the Ativan was a good idea. Thanks for the info re: the Taxol, that's interesting. Best wishes to you and hope you zip through all of your infusions. Take care.