I need advice!

MakingLemonade

Has anyone with stage 3b IDC only been given Arimidex?  I'm being told by others that the doctor should be fighting this more aggresively. I have a tumor that is 6.3 x 5 cm. Although I haven't had surgery to check the nodes, the doctor shows me where they  are knots under my arm, one is 2.3cm.  I'm just a little worried about this. If anyone has any advice I would greatly appreciate it.

Momine

No chemo, no surgery? 

I had IIIb ILC, and I had neo-adjuvant chemo, BMX, more chemo, radiation, hysterectomy (to cut the estrogen supply and put me in menopause) and will now start femara.

MakingLemonade

  No chemo and no surgeery yet.  My oncologist hasn't said anything about chemo. The breas specialist that I went to first said it would be chemo, surgery, radiation, then pills for five years.

My family is worried that maybe this doctor is doing everything he should be. 

Momine

Have you asked then onc when he plans to start chemo etc? 

MakingLemonade

We asked him how long I would take the arimidex and he just told me keep taking it and come back in four weeks to see how it's doing, this was Tuesday, my next appointment is May 1st.  He didn't give me any kind of treatment plan. He doesn't seem to really want to answer questions. He hasn't really told us much. I've looked up more on line than he has told me.

Momine

Call him up and ask him directly what he has in mind for your treatment plan. 

MakingLemonade

   We are thinking of changing doctors or  at least getting a second opinion, I've kind of lost trust in this doctor. I'll call and ask what he has in mind though. It's been a month and a half with him and I something just doesn't feel right.  

Thank You Momine

I appreciate you taking your time for me 

Momine

My pleasure. A second opinion is always a good idea anyway, but you should also find out what exactly this dude has in mind. Good luck with it and keep us posted.

NancyD

Well, Arimidex IS a form of chemo. We're just so used to the harsher kind that is like poison that we think a little white pill a day is nothing. That said, I think your onc is bringing you back in four weeks to see how the Arimodex is doing. You might have as favorable results as the women on standard AC+T or TAC.



But as was explained in another thread in this Stage III forum, hormonals only work on the bc cells that are hormone receptive. Sometimes bc has a mix of cells, with some that don't have ER receptors. I'd want the harsher chemo to do a systemic flush hunting down those buggers, especially if your lymph nodes have already been breached. I'd worry that some have gotten through that line of defense.



Did your biopsy give a percentage for your ER+? Mine was @ 95%, but even then, I had six doses of TAC before I started Arimidex. I consider it a maintenance med, but maybe the thinking has changed. Are there other factors that are playing on his decision? How's your health, otherwise? Any heart or liver problems?

Momine

Nancy, I am not trying to argue with you here, but Arimidex is an AI, and I don't think it is considered a chemo drug.

Racy

What sort of doctor is treating you? What country are you in? Are you sure you are stage 3?

NancyD

In the strictest sense, it is. Any chemical you put into your body to fight a disease is "chemo". We just have gotten used to using that term when we mean the harsher poisons.

MakingLemonade

 I'll try to answer everybody.  The onc said stage 3, the tumor has come through the skin. The breast specialist told me that this should have killed me by now. No heart or liver problems . I've had the biopsy, mri, ct scans.  The onc didn't really go over the results, just pointed at the bottom of the brain mri and said "see, normal"  I am in Florida, and the Doctor is hemotology/oncology. 

Kelloggs

Making - I would definitely go for a second opinion!

NancyD

Definitely get a second opinion. Any doctor, especially an oncologist giving biopsy results, who doesn't explain the medical jargon is not a doctor I would stay with. And especially one who is going with non-standard of care, as we know it, who doesn't explain why he's choosing that course.

MakingLemonade

The family thinks that he won't really do anything until the insurance comes through. That's the reason he isn't really giving the attention that he should, it's about the money. After he started treatment, his policy changed and I was called the day before I was supposed to go in to get the results of all the scans and basicaly told if I don't have the money don't bother to come in. It was another three weeks before I got back in.

MakingLemonade

Thank you for all your responses.  I'm going to see another doctor and find out what everything means. We just had a feeling that there was more we should be doing. good luck to everyone.

JacquelineG

Oh yes, there's definitely much more he should be doing -- if i were you i would not go back to this doctor -- get a second and even third opinion. If you are Stage 3 and the tumor is going through the skin, i think you definitely need more treatment! Sounds like this guy is dragging his heels - big RED flag in my opinion, regardless of insurance issues!

jackie

Angelfalls

I agree! Good luck with your next doctor's appointment. I really hope you'll find someone who'll give you ALL the treatment you need and as quickly as possible. Fingers crossed for the best possible outcome. Sending gentle hugs, Angelfalls xx

lkc

I totally agree with the other ladies, dear you need a second opinion. With  the presentation of your symptoms and your staging you will need  I.V. Cytoxic Chemotherapy which  is not an oral drug like an AI , which works differently.

Good Luck.

12345678

MakingLemonade - I certainly agree with the sisters that you should find out from your onc what he has in mind, so you understand clearly.  Or, if you are concerned, get a second opinion, soon. 

As SherriG wrote, I am one of those ones on the AI Aromatase Inhibitors/Arimidex/anastrazole trials given to try to reduce the size of the tumor prior to surgery.  The good news is that it has a very high success rate (I think my onc told me in the 90th percentile) of shrinking the tumors greatly, especially for ER+ as yours is. My nearly 5cm went down to 2.5cm in 4 mos. and I have the more difficult ILC to shrink.      

However, because it was an approved NIH clinical trial, they were sure to biopsy my tumor even only two weeks into it to be sure it was working before they let me stay on the trial too long just in case it wasn't.

You should know if you signed papers to be on a trial as it is an extensive interview process.  If not, you should look to another doctor if this one can't explain his behavior to you.

I hope you don't worry too much.  Arimidex has a high success rate and should keep things in check for a while, but I agree with the girls that you should definitely get out there and get some answers that make sense to you.

CoolBreeze

An AI is different from a chemotherapy drug.  The definition of a chemo drug is not any chemical that is put into your system - chemotherapy acts in a specific way.  Chemotherapy agents act by killing cells that divide rapidly - the definition of a chemotherapy drug is an anti-neoplastic drug.  It is one that interrupts the cell life cycle in some way, and different chemo drugs do it at different points in the cycle.  

Newer anticancer drugs act directly against abnormal proteins in cancer cells, such as Herceptin and HER2.  Aromatase inhibitors act against estrogen - they are not considered chemotherapy drugs.

It doesn't matter much for your purposes but I tend to think it's important to know the medical terminology so we can talk to our doctors properly and make ourselves understood.   If somebody says they don't want chemo and what they really mean is they don't want an AI, that is going to be very confusing.

And, like the others, I think a 2nd opinion is in order.  We stage IV gals often just have AI treatment but I thought IIs and IIIs were given adjuvent chemo.  I was dx'd initially at Stage II and I did surgery, six rounds of chemo (tamoxifen and carboplatin) and a year of herceptin.  A friend dx'd at Stage III did the same thing as I did. My understanding was some Stage III women had chemo first and surgery next.   So, I would double-check.  

But the poster above me is correct, an AI can be a very effective treatment.  

1Athena1

Perhaps your tumor is not operable at the moment so chemical therapy (to use a generic term) has to come first. I am wondering why there is no talk of radiation now. Glad you are seeking a second opinion. You want a doctor who will enter into dialogue with you. This may be a case where there is no one-size-fits all solution and where you need to choose amongst hard-to-compare choices. The reason why I bring up radiation is that it might be a quicker way to stem advancement, as AIs can take a while and there is hardly a guarantee that they work to shrink your cancer.

It would be a good idea to ask a second opinion for a timeline of what choice will be made when whathappens/does NOT happen. What I mean is this: If you start with the AI, can you and the doctor agree on a timeline by which IF IT HASN'T WORKED you resort to other treatments? It would be a good idea to have a pre-set decision tree in your case. Good luck!

MakingLemonade

First my husband said he would like to thank each one of you for being here for me. It's been very hard not knowing the answers and not knowing what questions to ask. He says it's just awesome to see so many of you offer advice on this. It's been very hard for him to understand something that is out of his control.

Second I will be going to a different doctor next week. On this journey I have met many wonderful people. One of these people has gone above and beyond to help me and my husband with this, through her I met another wonderful woman that is 5  years out of cancer today. They have arranged it so that I may see her doctor next week. Her doctor thinks this is horrible the way I have been treated and wants to see me asap. She will sit down with us and explain everything to us and where we should go from here.

Again thank you very much for your responses and Each one of you are in my prayers. 

pminxy

I am glad you are getting a second opinion for this doctor is clearly not there for you and  with what you have told us , you need deep treatment yesterday!, I was on Arimidex, Femara and all those other things and all they did was make me sick or things worse. A good doctor will run a full round of tests and then tell you how it is to a certain extent for doctors never seem to tell you everything unless you wring it out of them! It is obvious you need treatment and it shouldn't be about the money for what price is a life?

I am on my 6th round with cancer in some form 3 rounds being BC and I am now undergoing palliative treament to make me more comfortable hopefully but while I can I try to pitch in and help who I can and Making lemonade you have been given a tough strike, you are doing the right thing by questioning-keep it up so you can get answers for what doctors forget cancer just doesn't hurt/affect the victim it affects all who are part of their life in some form and for you to get what you need you must do what you need to. My favorite thing is writting down questions as they come to me and getting answers so I know where I am at and I am not afraid anymore to call doctors out on what they say if, they deny prior information or deny stuff that is factual etc. My Gp says my doctors are scared of me because I know to much and they like it when patients don't. But it is your body your loved ones and yourself suffering because of the doctor you mentioned and it is wrong on so many levels, good luck dear one and may thing turn out for the better for you.

12345678

MakingLemonade - I had such a warm and cozy feeling reading your last post.  It sounds like you have a real support system around you with your husband and your friend and your friend's doctor being so helpful and wanting to help you through this.  

Give yourself a big pat on the back for taking such a proactive approach to your health!  

You are to be commended; and remember that there are many of us out here who want to help in any little way we can and are praying for you and your success!

Congrats and God bless!  Let us know how it goes...

bak94

I just read your post and I am so happy you are seeing a different doctor. I do wonder if it is insurance issues, which is just wrong! It sounds like you have a great support system with your husband and friend! Please keep us posted with what is going on.

Momine

Hugs to your husband and to you. It is such a difficult process you are both in, but I am happy that you have him by your side.  

It is great that you have some people on the ground who are able to help you, and it is wonderful that you are getting a second opinion and some answers soon.