Topic: Dazed & Confused

I hear your fear of chemo, and I didn't do it !

Can you have your tumor checked with OncotypeDX scoring.  If you score low, maybe you can quit the chemo.  Tho I am not sure how fast they will be able to return you results (2-3 weeks) and by then you might be done with the chemo.

I had no node involvement and scored 20 so opted out.

Best to you!

On the Oncotype website, it states that the testing should be done before starting chemo. I don't know if that means it CAN"T be done after starting chemo, or if there really isn't a point to testing once chemo has started, since it's a decision tool regarding chemo.

What has your onc said about your reactions to the Taxol? I'm surprised h/she is leaving you on Taxol if the reactions are getting worse. I think a reasonable course of action would be to switch the Taxol to Adriamycin--it'd be worth looking into.

BTW, my oncotype was 18, and I opted for chemo b/c I was 38 at the time, and my tumor was fairly large. 

Sorry about the double post--the server is acting up.

Victoria,
LauraGTO is right. The women on this board can help. As much as those who love you want to help they don't have the experience to understand what having breast cancer is like. The treatment days for me were like a weird dream in many ways. My emotions and physical states were up and down. The infusion nurses and oncologist were able to help me, answer my questions about the side effects, etc. However, I had to ask questions to get the help I needed. I hope they will listen to you and give you relief from the reactions and side effects you are having. There are many things that might help, but they will know best what they are in your case. You don't have to wait until your next appointment for help. Call them when you need to. Let them know about your fears, too. That's very important.
Gitane

Hi Victoria - I'm glad you found this web site - the women here will definitely help allay your fears! I too feel like wacking people upside their head - but in a loving way because even in their ignorance, our friends and family still worry about us! I love your signature "victorious" because this IS a battle and you sound like a very strong couragious warrior who WILL see victory!

Hello again to all.  Thanks for responding.  I tried to write back for the longest time but kept getting an invalid login attempt.  Well, it turned out that th day I signed up and wrote and created my username must have been a chemo-brain day as I mispelled victorious.  So I kept typing in the correct spelling and therefore getting bumped at login time! 

 Again, I want to thank each of you for writing.  I am 8 days on the other side of chemo #3 with one to go.  I am feeling like absolutel crap.  And I am angry.  About a lot of things.  I have made an appointment with a therapist to try to work some of this stuff out.  I am seeing a male therapist for the first time.  I fear that I will live the rest of my life being kinda pissed off and bitter.  I don't want that but saying things like  "oh gee I'm great.   I'm soooooo glad I got this cancer becuse I am learning so much , my life is going to be so much better". 

I would love to find a local support group but I live and work kinda out in no-man's land.  The isolation is not great either - but it is where I am.  I'll wirte more or elsewhere about who I am and what I do and where I live and all of that.  I do think that a Dragon Boat Team would be fantastic but the closest one to me is about 2 hours away.

Thanks again.

 Victoria

Ah, that makes sense why they're leaving you on the T/C then. I'm sorry you're feeling so crappy. Vent away here--we've all been there, done that. I hope the therapist will be helpful. Keep us posted on your progress--glad you were able to finally log back in.

Hi Victoria and Collector,

I have been diagnosed twice with ILC.  Last Tues I had a bi lat with recon and an ooppherectomy.  I was 46 at my inital dx.  I did not do chemo since my nodes were neg,  I did do rads then tamox.  18 months later they ILC was back.  The rads and Tamox did not stop the new occurence.  My understanding is that rads and chemo are not always successful on low grade tumors, which mine was.  I wish someone had told me that since I would have skipped rads and gone straight for the uni lat at that time.

I will now start AIs, which is why I had the oopherectomy since I was premenopausal.

I have found ILC to be insidious and sneaky.  Clearly standard treatments have not worked for me.  I have the CYP286 test, which evaluates your liver enzymes to see if you are a high or low metabolizer of tamox....I was a high metabolizer, yet it did not work for me!

I am waiting for oncotyping results and a new "tipping" test they are doing at UCSF to see what the risk is that the cancer may have spread beyond the breast.

My advice is to always listen to your inner voice and ask lots of questions.  If you are not getting the answers you need get a second opinion even if it means driving and hour to two to get it.  If I had not pushed my Docs I would have not discovered my recurrence. These boards have been so helpful to me and have helped me ask better questions and to be a more active participant in my treatment.  If I had not gotten a second opinion I would have gotten treatment at my original hospital and would have had a much more aggressive and invasive surgery. I am so happy that I switched to UCSF!

Wishing you all the best,

Valerie

Thanks, Valerie.  I want to do whatever it takes to lower the risk of recurrence but there is a lot of grey area about Invasive lobular and it's hard sorting it all out.  I do plan to call my gynecologist on Monday and talk to him about further screening he would recommend.  Going forward I wish I could find one team of doctors with whom I was completely comfortable who could look at me together and communicate amongst themselves.  In my current state of mental paralysis, I'm not always communicating clearly to the doctors individually.  I know I have to be an advocate for myself and my husband has gone with me to everything so we have an extra pair of ears BUT it still seems like something could fall through the cracks.  I'm sure, too, that the paranoia is just starting!