Neoadjuvent-- MO said he likes the idea of seeing how tumor responds to chemo. That sounds reasonable to me. I was questioning it because with original BS appointment-- I worried that I may have jumped on LX too fast without exploring options and BS thought Neoadjuvent was best because my tumor is 3cm... So I wanted to revisit that without any bias on my part for a LX... whether LX or MX is best.

It did seem to me that if neoadjuvent chemo shrinks a tumor, LX should be fine-- BUT maybe it's just safer to get a MX given the size of tumor and HER2+??? I kind of MADE the MO tell me he had a slight leaning towards MX... He really thought either would be OK.

SO I pinned him down a bit on that, and it's still a bit confusing!

--

I'm really going to have to talk to the BS again--or maybe do a 2nd op or find other docs...???

I think MO was getting a little testy on the phone call with me asking about SNB and Perjeta... but maybe that's in my mind... I'm just so anxious I'm not really reading people right--plus on the phone it's pretty impossible anyway. Wow... maybe I need a xanax rx now??? I'm trying to stay calm, but I feel very wound-up with all this stuff up in the air and still needing to be sorted out.

My friend who was diagnosed when I was has already had LX surgery and is back home with no problem... but she only had DC, about 0.4cm... *sigh* I can't say she's exactly lucky because bc is bc, but wow... I wish I had her problem...!

I think once I get the treatment nailed down (and I know that it may have to change, but as long as I get things started!), I'll actually settle down a lot and feel less stressed.

And yes... that's why I don't really want to get caught up in the numbers-game of percentages for this and that too much, since you can do that and it can go well or not, because there's a big roll of the dice in there that you can't control!

I'm fairly pragmatic. As long as I try and make the best choices I can, then I've done my job and whatever happens, happens.

Thank you all for your comments. I feel less stressed just reading them all! Seriously. It helps just to be talking with others about all this.

granny72-- Thanks for that information! That helps me, rather than me just going by individual's experiences that I happen to notice!

I wonder if the percentages would be different if the chemo is neoadjuvent??? I guess it might be too early to have decent statistics on that???

SpecialK -- Thanks for the clarification. It's so hard to figure out the details of studies and percentages.... Particularly when I'm new and just looking into this all! I really appreciate knowing this!

SECOND OPINION--ONCOLOGIST-- I went to Dr. Daniel Lieber, one of the top guys in west Los Angeles at The Angeles Clinic and Research Institute , he's an oncologist, hematologist, UCLA trained, and ass't clinical professor at UCLA School of Medicine. Had to pay out of pocket, since I'm on KP.

He's in favor of TCHP, neoadjuvant. And got a nurse in to look at my veins, and she recommended a Port. And he said SNB with the Port. before Chemo. Discussion about what kind of breast surgery can wait until results of chemo.

He also recommended a lot more tests that should be done before Chemo:

PET, full body scan

MRI of Brain

MRI of Body (breasts)

KP, so far, has only wanted me to get a CT scan of hips and abdomen, which I have done, but haven't got results yet. He said with a cancer that can easily metastasize, it's best to get all these scans to make sure of no spread before chemo messes with things.

He said he'd write a letter with the recommendations, but I should try hard to get KP to get me these treatments.

My sister has railroaded me into changing insurance from Kaiser to something more PPO, so I can go find doctors in more places (end of open enrollment is this week). This CAN delay treatment.

But it's not like KP was doing what needed to do, so I can see her point. I'll try and get KP to at least get me tests and the SNB and Port and maybe start on Chemo...

Dr Lieber said that interrupting any chemo that may have started during a switch-over in insurance would be not a good thing. But my sister says I can get things lined up more quickly--in JANUARY, with new insurance. It looks like I might be heading in that direction. I'm not happy with it, but if my sister is insisting on housing me at her place and driving me around for however long it takes, it looks like I can't really stand in the way (Yeah, I'm weak!!! I'm a push-over!!) gah.

--- PLEASE-- COMMENTS WELCOME!!!!---

Thanks, exbrnxgirl. Yes, I'm ambivalent. I worry about snags in changing everything around and that it can lead to delays. But I am going to need her help sometime through this process, so I need to keep her happy. AND I'm not totally for or against. I can be indecisive! (I'm sure this thread shows that!) I'm not sure who to trust and whose advice to follow at this point, because there are so many conflicting views. I'm mostly going with what seems somewhat reasonable and with what most people are saying --and with what feels OK to me... But I really am not sure on this change in insurance right now. The 2nd Opinion guy said delays might not be optimum, but he didn't say 'don't do it'-- and he didn't have anything invested in giving his opinion, since I paid him up front.

I'm not great at dealing with stressful situations, and this one is probably the worst. We had to decide to take my dad off life-support, but really, that was pretty inevitable and just yes or no, and we made calls and got advice and did it. That whole thing was stressful (and my sister was horrible during that period. I still shudder to think about it. But she seems to just get over it and I try to go along since she's not actually toxic, just human).

Thank you for letting me vent about all this. It really, really helps! It's just good to know that there are people out there who can comfort and give their thoughts with no other agenda than just being there and lending support! AND who actually know something about this whole process! I'm truly grateful for you and everyone on this site.

Thanks for those thoughts, kayb. I'll definitely have to look into that. But the 2nd Opinion Doc was saying that I should try and get Kaiser to do as much as they would during December, since waiting would be bad! Which seemed to infer that those tests done by Kaiser would be acceptible. I even worried about whether a chemo port would work going from one place to another??? But I guess a different one can be put in...!

My current problem with KP is that they are now saying they ONLY do SNB with breast surgery and won't do an SNB before chemo when done neoadjuvently!!!

This is weird because when I first talked to the BS she actually brought up that it might be possible to do the SNB when Chemo port was put in, if doing neoadjuvent chemo!

This is turning into a nightmare.

I think my only hope is to just switch and wait until January!!!! This is not good...

I'm talking to the MO at KP again tomorrow. What if he says no to Perjeta and the SNB again???

Do I start talking about State Insurance Boards? Or continue and try to get KP to someone do these things?

Or start paying out of pocket until January? That could be NASTY!!! With a PET involved!!! I guess I could take out a reverse mortgage or something!!! gaaah.

Thanks, exbrnxgrl! Good to know about the Port.

Unfortunately, I might not get a port because MO was against it. Also against SNB.

I'm not sure what I'm going to do now.

I'll change insurance because I'm thinking KP is going to leave me to hang unless I just follow what they say, and I don't want to fight them constantly. I don't like conflict. I would totally have gone along with the MO's no SNB, no MRI, and his TCH no P course... only it doesn't seem like it's the best way.

Should I try to at least get some TCH in me??? So I don't have to wait until JANUARY???

agh...

MO meeting update-- after he quickly looked over the 2nd Opinion recommendations, he said OK to the Perjeta!!!

He also said he wasn't familiar with Perjeta with carboplatin, he knew it was OK with Herceptin and taxotere, he said. He said that regions often had different protocols and said the Adriamycin was given with Perjeta on the East Coast, which is why he kept mentioning Adriamycin!

That he hadn't kept up with the UCLA protocols using TCHP still worries me a bit! --Does he even know the right amounts to administer??? aaaghh. And we're out here in SO. CAL., so UCLA protocols can't be that much of an unknown!

But at least I'm getting Perjeta, and TCH... in some sort of mixture! Chemo scheduled to start next Wed.

Surgeon is still saying SNB only done with breast surgery, even though I'm doing neoadjuvent! How involved is an SNB???

MO agreed to a Port--so I'm getting put-under to install that. Could an SNB be done at the same time???? The surgeon actually mentioned that during the appointment I had with her but she's conveniently forgetting! I'm going to ask the BC Coordinator RN if she can get me another surgeon... but things are getting late for that. Port will be going in at Radiology on MONDAY. WED. morning is Chemo. WED. Afternoon is Radiology appointment.

I pushed to get more tests done, too and I'm getting a Bone Scan and MRI for Brain the week after Chemo, and MRI bilateral breast still to be scheduled.

He said he'd even do the PET, but said it really was bad radiation. So I waved it. But might bring it back on the table if I'm not getting and SNB! --Do you think PET is more important since I'm not getting and SNB?

I think MO wanted 2nd Opinion to use as backup for putting in orders for all this other stuff that isn't automatically done by KP. He even said he was glad to get the 2nd Opinion letter in his hands! I had thought the other oncologist was being very cautious recommending PET, MRI Brain, MRI Breasts, CT neck (already got abdomen/hips), genetic testing. But now I think he was throwing in everything he could so that I might get SOME of those. He said he automatically would have order all those if I was at his clinic. I might be joining his clinic if he'll take me as a new patient. they seemed very careful and thorough. And immediately recommended neoadjuvent TCHP. ... and SNB... and port... Radiation to be discussed. Herceptin 1 year, Femara 5 years.

So at least I'm starting treatment soon. That's a big worry off my chest. I'm still worried about lymph nodes, but at least chemo has a chance of killing anything that might have spread...!

Just did the MUGU heart scan today. Hopefully it will be OK. (I have sometimes had heart palpitations--but apparently lots of people have that.)

I've lost over 5 lbs in a week. MO was a bit worried and asked if I needed something to sleep. I told him I was sleeping OK, I just had to be researching stuff at night and running to medical appointments all day and didn't even have time to eat! I think I had coffee this morning, then some cut fruit at 5pm--eaten in my car in hospital parking lot!, and didn't get home to eat dinner until 7pm today. Well... It's not that I'm going to waste away. I was a little overweight before all this happened and hopefully I'll eat better tomorrow since I don't have an appointment!

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THANKS everyone for helping me from totally loosing it through all this. Still far to go, but at least I'm getting some treatment... about a month after diagnosis...

I'm really beginning to think that KP doctors need the 2nd Opinions in order to make sure KP policy doesn't get them into trouble. They can always say that the didn't suggest all this extra stuff or different treatments and point to the 2nd Opinion and say the patient wanted that, too.

Because the MO also told me to try asking my surgeon again, copying the 2nd Opinion letter, and she might change her mind from the KP policy (she also kept phrasing it as if the "no SNB separate from breast surgery" was KP policy. whereas before, just talking with her, she though SNB before chemo was recommended!) IT seems like she checked and was told not to do anything that wasn't KP policy just because the patient was asking.

Anyway, the MO totally turned around once he had the 2nd Op. letter in hand! It was like magic! Just talking to him on the phone didn't work. He had to have the letter in hand!

2nd Oncologist recommended about every scan possible! He's from a big fancy clinic and they just do it all to be thorough. I don't think he'd have recommended the PET if he thought it was that bad. But there are always risks with everything and they probably aren't clear-cut, either!

Thanks, kayb!