news. help me sort things out please.

michka · 06-20-2011, 10:16 AM

I am ashamed to say this but I am so down that I cannot think right.
I am going to try to share the last informations I collected.
1) I had 2 liver MRIs. One with a more powerful MRI. 2 different places, 2 different doctors. Both say they see what could be considered a tumor in part 5 that they would not have signaled if I did not have my liver history (???). I figure it means the tumor is growing?
I had a tumor identified in part 5 before my liver resection but the surgeon did not write on the report she operated on part 5.
2) I am on Navelbine +Herceptin and added Tykerb 2 weeks ago. My CA 15 3 are not dropping. They stay between 30 and now 40!
3) I had to fight to have a better biopsy of the resected tumors. It came back saying I am 70% ER+ 0% PR. In december when I had a celio for what I thought was a single tumor it came back 20%. The original tumor was 90% ER+
4) I had a pet scan. It showed all kinds of things in the liver because of the RFA but also the same tumor not quite in the same place. SUV from 3 to 6
5) the pet scan always lit up where I had my breast reconstruction. they never worried about that because the surgeon wrote he scrapped the cartilage and the bone near my sternum to pass an artery. And it always hurts me there since if I touch that place..
Now they want to biopsy the sternum. I just can't do that. I am not courageous. It is like I can't support anything anymore. Can't a MRI show if it is a met or not? I never had a MRI of the sternum. Anyone had a biopsy in the sternum?

I am seeing my onc tomorrow. This is what I intend to ask. Please correct or complete my list.
I want a MRI of the sternum
I want Faslodex NOW
I want to wait another cycle before switching to something else than Navelbine
I want to see the "met blaster" I mean the RFA specialist (Joan you know who I mean!).

Any thoughts? Even if you think I am a real mess you are allowed to say so!
Love to all. Michka

BonnieR · 06-20-2011, 11:13 AM

I would never think you were a mess and dont apologize for being overwhelmed and upset. You are supposed to be under the circumstances! That's why we are here. To understand and support you. Vent all you want.
I cannot address the medical stuff but I would suggest having someone with you when you ask all the questions you have. Someone to hear the answers clearly. And are there any advocates on staff where you are being treated? Who can help you sort it all out.
Please be kind to yourself. And keep the faith.

Rich66 · 06-20-2011, 12:16 PM

Those SUV levels aren't very high. Can they say for certain you have liver mets?
An MRI is sometimes used to determine bone mets. MRI wouldn't give you pathology. But at this point you seem to have reason to target ER and Her2 anyway. maybe ask them what the practical benefit of the bone biopsy would be. If the mets aren't too active, you could try other ER approaches and save Faslodex for later.

tricia keegan · 06-20-2011, 01:29 PM

Hi Michka,

I'd be confused too with all this to think about!!! As Rich says these numbers are not that high so it sounds to me like your onc wants this biopsy to make certain of what you're dealing with and arrange a treatment plan that will best help you depending on the results.

I'd be a coward too in this situation but had a mets scare last year in my bones and agreed to a biopsy because I really needed to know if it was cancer. In my case the spot was'nt big enough to biopsy and time showed it was'nt mets, however from what I've read this type of biopsy is done with anasthesia so chances are there'll be minimal discomfort (should you choose to do it) http://surgery.med.nyu.edu/content?ChunkIID=14757

My best wishes to you and wish I could help more but praying this is not cancer!

KDR · 06-20-2011, 03:10 PM

Michka,
I want to make you feel really good! You're beautiful, strong, caring, informed, well-loved, a friend to all, and you are going to be good!
Things have a way of sorting out. Do you have one of those beautiful Rigaud Cypress candles? Light it! Sending good vibes, as always,
Karen

krisvell · 06-20-2011, 04:15 PM

Hi Michka,
You are together and have a well thought out approach with good questions for your oncologist. I am sure the liver mets ladies will chime in with their wisdom and let you see that you are doing the right thing and will fill in any blanks.
I am rooting for you. Good luck tomorrow and please keep us posted.
You're gonna be good!
Love,
Kris....

chrisy · 06-20-2011, 10:10 PM

First if all, you are NOT a mess and you have every reason to be frustrated, confused or down. Totally legit, all of it and everyone above has said it much better.

You are, however, dealing with a MESS of information which is not conclusive. And your team of experts is also not quite sure what it means. So I'm certainly not going to try any medical interpretations other than to just observe that because you have a "complicated" history it makes them more likely to question things while at the same time making it more challenging to interpret.

You have a great list of the data that has been collected. Maybe start with that and craft questions (how so you interpret this? What do you recommend? And why?). The thing I did notice about your questions was that they seemed more focused on what you think the next steps should be. That is important but the options may get clearer (or not) of you get a better grasp on what the doctor is thinking.

What has worked well for me is to write out and email my questions in advance. That helps me organize myself, gives my onc a better idea of where my concerns are, and mostly prevents me from leaving the office having forgotten what I wanted to ask. I also agree, it's helpful to bring someone else and/or tape record the visit. Your doctor won't mind and it's amazing how much I DON'T hear in the heat if the moment.

Michka, I think dealing with um clear or conflicting information is one of the hardest parts if this game. You are doing a great job.

I second all the comments above. And add: don't forget to breathe.

Chris

Rich66 · 06-20-2011, 10:17 PM

Yeah..that's a great idea to give the onc your questions beforehand..even if it's handing them to the nurse when you get there. Might be a good idea to bring some kind of audio recorder. Especially when stressing, I have been surprised at times at the difference between my memory and how the conversation actually went.

michka · 06-20-2011, 11:32 PM

Thank you all for your precious support.
I always go to see my onc with my companion. But he doesn't read English so is less informed and gets lost in the conversation between my onc and me. But when he sees I don't like the answer; he asks why in front of the onc
I always have my list of questions but I cannot send them in advance. I don't even have the onc's mail and the secretary just takes care of appointments.
Rich, why keep Faslodex for later? I think you posted once that hormonotherapy does not work well when you are PR 0% except for Faslodex that works differently. Or is it bad to have hormonotherapy at the same time as chemo?
I just don't feel like going to the hospital today.Love to all. Michka

Trish · 06-20-2011, 11:59 PM

Michka, I agree with you about the Faslodex. From what I understand it destroys the ER receptor,works well with Herceptin and is superior to other anti estrogen meds especially for HER2+. I am hoping to get on to it if I can as the other anti hormonals have not been effective for me. (though I didn't knowingly progress on Tamoxifen so I would consider it should Faslodex not work). All the best with your difficult decisions. I hope you are feeling well. Trish

Sheila · 06-21-2011, 04:43 AM

Michka
I too think you are on the right track...take the questions you have written with you so you get answers...we get involved with the moment and forget half of what we wanted to ask when we are with the Dr. You have struggled over many hurdles lately, we are here for you....please lean on us. Keeping you in my thoughts and prayers that the plan will become clearer for you Michka.

Lori R · 06-21-2011, 05:23 AM

Michka,
You do not give yourself enough credit!! You have been so diligent in your care. Don't forget, you are recovering from a major surgery. It is no surprise that you would be tired and not interested in more tests.

You have already taken a set of difficult issues and broken them out, which is a fantastic start. The list is pretty long and when trying to absorb everything at once would be enormously overwhelming.

Of the issues, which do you want to tackle first? In this marathon, it is one step at a time, that is all we can expect from ourselves.

Thinking of you and wishing you a boost of strength and serenity for the next step.

Lori

Rich66 · 06-21-2011, 09:29 AM

Michka,
You might be right about the PR- issue and Faslodex. I honestly didn't remember the PR- issue when I responded. I just mentioned using other therapies first if possible since Faslodex seems to be able to work further down the line. But if it's appropriate now, seems like it can be combined with chemos..probably helping them.
There is at least one onc who combines Faslodex with Aromasin to cover the receptor as well as non-ovary sources of estrogen..an ER blockade.