2nd opinion question?

Chelee · 10-01-2009, 05:40 PM

Most of you know I was just dx with a recurrance & am now stage IV...I put in for my 2nd opinion last wk. My onc and HMO seems to be stalling & delaying this appt it seems. I've been on the phone non-stop every single day trying to get this 2nd opinion ok'd...I'm in a hurry to see this onc.

So finally today they straighten it out but they say I can't see this onc I was referred to until Oct. 20th. That seems like an awful long time especially since my TM'ers have been going up for a year now and I've been told I have bone mets, recurrance in right axilla...possible liver and chest wall. (I think the chest wall is a seroma) But I'm still very concerned about the bone mets in femur ilium, and right axilla. Cancer doesn't wait for these appts unfortunetly.

Have any of you stage IV woman had to wait so long for your 2nd opinion? Is this normal? I'm very nervous about waiting that long. I asked for something sooner but they made it sound like this onc only works or does consults 2 days a week and that is the best they can do. Do I dare wait that long? This is beyond nerve racking. Nothing is ever easy!

Chelee

Nancy L · 10-01-2009, 05:53 PM

I assume you are talking about a second opinion regarding treatment protocol rather than your stage. Can you post what your primary oncologist is recommending? Perhaps others have been down your journey and can make a comment. When I was diagnosed with stage IV breast cancer, my desert oncologist was ready to put me on chemo. But I had already seen Dr. Slamon a few months prior because I felt I was trending water and it was just a matter of time. I emailed his PA and told her my diagnosis---she reached Dr. Slaman and he ordered what I am currently receiving----Herceptin plus Tykerb. My desert oncologist said he had never heard of this combo but he didn't hesitate to administer it. So far so good.

Stay strong----your are doing a lot of the right things.

P.S. I see you are from South California. Are you close to Palm Springs?

StephN · 10-01-2009, 09:00 PM

Dear Chelee -
Often if you are going to see a high-powered "rock Star" onc, it will take a little time to get in. Have you asked to be put on a cancellation list??

At this time you have started good standard treatment with the Herceptin and Zometa. So you ARE under the influence of some good drugs.

It also may take that long for all your other scans and tests to be read and gathered and sent on to the 2nd opinion doc.

Try to relax a bit now that you actually have the appt and give your body a break from all the cumulative stress.

Big cyber hugs!

Chelee · 10-01-2009, 09:36 PM

Hi Nancy, Yes I am talking mainly about the treatment protocol...but I would also like this 2nd opinion onc to go over my prior and recent PET/CT's. I have quite a few questions that my current onc has not addressed. My onc just said since I have recurred I can start on Herceptin, which I've already started alone. But she said I can add Navelbine, Tykerb, or Taxotere...she said my choice. She also said there are clinical trials I can look into but did not mention which ones. (Which I know of most of them from this Her2 board but would like some more input.)

Seemed like she was leaning towards Navelbine? But I have other questions since I can't have rads to chest or axilla due to lung problems...why aren't we considering going in and removing the enlarged lymph node? I've seen where other woman on this board had that done. Plus I also question that lymph node because it's been there since my baseline PET/CT. I've had them ultrasound that for the last two years and it always said 1cm enlarged lymph node probably due to post surgical changes. I wanted it biospied many times but they said they weren't worried about it. But now it did show activity on PET and it now says it's 1.8 x 1.8.

I also have questions about this increased activity in hip area...that showed up on baseline 3 yrs & 8 months ago after first cycle of TCH but they weren't worried about that either since I do have problems with scoliosis and both hips. (I have brusitis in both) How do I know for sure it's really mets? Then it says, "mild increased focus of activity within the liver. No CT correlated is identified." I have a LARGE seroma right about that spot where they say there is increased focus in liver...I'm not sure it's not all caused from the changes in the seroma? It's been there 3 yrs and 8 months also. I just don't want my onc slamming me with a bunch of chemo until I have some more concret answers to these scans. I don't know what to believe at this point & she hasn't spent any time addressing my questions or concerns. If I do have mets to hip I have no idea how bad it is? She's told me nothing other then I need to start treatment. Didn't recommend me back to my breast surgeon to check node...bone scan to make sure it's mets...nothing. So I need to see someone soon that I can trust & will clear up all these questions I have. But I didn't want to wait that long.

Chelee

Chelee · 10-02-2009, 03:09 AM

Hi Steph, No I didn't think to ask about a cancellation list...I was so darned disappointed when they gave me Oct. 20th. I knew I wouldn't get in tomorrow...but I seriously had no idea they would make it almost 3 wks away. (With the delay my onc caused me getting this authorization thru...that makes it a total of almost 6 wks wait time...that doesn't seem right when dealing with stage IV Her2 bc.) Let alone the yr since my TM'ers starting creeping up.

I know Her2 isn't considered slow growing so it's hard to sit and wait as you all know. But I am going to call them tomorrow and ask them to put me on that list. Thanks for the idea Steph...much appreciated. Who knows maybe I'll get lucky.

Chelee

Mary Anne in TX · 10-02-2009, 06:33 AM

Chelee, I'm the pitts at waiting also.
The only thing I knew to do when I had to wait a bit for a next testing one time was to do research and put it all down.
I started a daily research on all the possible treatments (thought I might have a tumor in kidney to be dealt with).
I got a spiral, listed all my questions and began to study.
By the time the month was up, I had all the information I needed, plus a sheet of questions ready to ask. I had it so organized that my onc took the sheet and wrote his answers right on the paper for me! I loved it!!!!
Hoping you get in on the cancellation list!
ma

whatz · 10-02-2009, 08:29 AM

Chelee,
Any particular reason for just this Onc as a second opinion? Would there be another suitable Onc you could use that may can get you in earlier? I would think the same thing that I wouldn't want to wait another 2.5 weeks for an appointment but I'm also only at the beginning of this journey. You could look for the earlier appt. while still leaving the appt open with this onc as a fall back. Though only at the beginning of this journey I have learned in this short time that since I'm the one that has to live the consequences therefore I'm the one that's has to be in the driver seat. You've done great so far pushing your current onc. What's a little more push on another one :-)

Jean · 10-02-2009, 06:57 PM

Chelee,
I don't know who the other dr. is that you would have to wait until 10/20....but I would absolutely have a second opinion before you have any chemo.

I called Dr. Slamon today for you and while he is not taking new patients he is certainly consulting and will see you. Angie was ready to set up the appointment.
Call #310 829-5471 Ask for Jeff or Claudia they will set everything up for you to see him.

Don't Panic with the time line...you are on top of the situation and doing your best. While I understand how each day causes you stress....The 2nd opinion is a must
and that 2nd opinion should be the best you can find.

You have many questions and Dr. Slamon will have the answers. If you need any other help reach out to me
Sending you much love,
Jean

mamacze · 10-02-2009, 07:48 PM

Chelee,
I agree with Jean, if you are unsure of the appointment you have set up, call Dr. Slamon and follow his recommendation. But, realize that these "super" docs give priority office time to seeing their regular patients first - they then squeeze in the second opinions - so the wait to Oct 20 doesn't surprise me. I had to pull strings to see a doctor at Sloan Kettering within 3 weeks of my call - think about it - for very little money - they have to review mountains of data on you and give their best recommendation within a half hour visit - then they never see you again - second opinions are truly taxing on our oncologists - they do the best they can. But if Dr. Slamon is able to see you before Oct 20, jump on it!! Either that or see the oncologist you have an appointment with - if you have confidence in him/her!
But as Steph N said, you are getting a sound treatment now... relax, give the docs time to read through all your data - enjoy some chocolate, red wine - then you will be able to absorb what the experts recommend. Godspeed Angel.
Love Kim from CT

WolverineFan · 10-03-2009, 11:26 AM

Chelee,

I would push to get an earlier doctor's appt. I would be just like you and not want to wait. Did you see Jean's post? She seems to have something to where you could get in earlier. Best of luck to you. I think of you often. Please keep us posted. You are in our prayers and can beat this!!! Stay strong!

Hayley

Chelee · 10-03-2009, 08:58 PM

Kim you made a very good point about these super doc's. This onc Joe recommended and she has a very impressive backround! I can see she is a very busy person & I'm just happy that I even got the appt. to see her. She sounds well qualified & then some! I just didn't know if that was a normal wait time or my darned HMO stalling and delaying things. I never had these problems in a PPO. I'm just quite anxious understandable so.

I tried a different number for Dr. Slamon then the one Jean left for me the other day. All I got was a message machine for new patients...so I left a message I haven't heard back from them. But first thing Monday morning I will call the # Jean left for me. I plan to pay out of pocket for Dr. Slamon, so maybe I can get into see him before my other appt. at City of Hope. That would help me immensely. I called the case manager that is handling my case & she said with my HMO I can't have two 2nd opinions...I find that hard to believe when dealing with an aggressive bc. (I think she is wrong!) But for now I'm not wasting time arguing with them...I don't care what it cost for me to see Dr. Slamon...I'll gladly pay for it...well worth the money, which equals peace of mind.

I've been staying busy going thru all my medical records & trying to put things in order...on top of tons of research till I'm blind. I also have my brain MRI on the 6th...pray that comes back clear...I have enough to deal with at the moment. Then labs, my onc & Herceptin on the 12th.

Chelee

Lien · 10-04-2009, 12:21 AM

Dear Chelee,

You've done all the right things. You are getting Vit H so you have protection already, you have set up an appointment for a second opinion with someone you trust, you are getting a third opinion as well.

Now try to get the most out of those appointments. List your questions, do your research, but don't overdo it. You have time to get everything organized. Herceptin is buying you time. You could try to find out what additional tests might provide answers to your questions and investigate how long it would take to get these tests done.

The moment you knew there was metastatic disease, you took the right kind of action. There is no evidence, as far as I'm aware, that starting treatment earlier offers a better outcome. But things change so fast in the breastcancer world, that I may be wrong here.

Now breathe in, breathe out. Get yourself a good massage. Surround yourself with people you love. Do something you enjoy. Give your body it's best fighting chance by de-stressing as much as possible. Ask your friends and family to help you do that. They will feel helpless too, so if you give them something they can do for you, it will make them feel better too.

You WILL get through this. I promise. And as soon as you have a plan you believe in, you will feel a whole lot better.

Love

Jacqueline