Boobs of Steel

Kicking Breast Cancer's Butt

We are back here at Virgina Mason.. Morning visit to Geneticist.. I will let Tina decide if she wants to share that.

If you read my last post you know we were  pretty frustrated after Wednesday.  Today we are back on track we are working with the final picture of the data and refining it a bit.

We have had added tests today related to the other breast and one the lymph nodes on the right.  All but one are clear :) and that one is uncertain so we are doing a biopsy.

In this process, the doctors advise and bring the knowledge they paid so dearly for in time and money.  But there are people from the ultrasound tech to our surgery scheduler that set the mood often.  Amazing people who are positive and helpful along the way.  Something in their mood, says   “You’ll be alright”

It makes the 5 hours we have been on site, just a bit more bearable.

I still want them to fix what happened to us Tuesday and Wednesday for the future,  but there is really a talent for bright compassion that should not be taken for granted here.

 

So we just met with the cancer team working with us at Virgina Mason.  It may just be these people need some business process management and communication training.  I am not questioning the team’s skill, nor their dedication to the patient.  And they are trying hard to make the process transparent and open.  We even got a big binder with our data and reading and all the direct contact info for the team.  That impressed me.

But WTF just happened?

Day 5- We get a call less than 24 hours after the MRI.   The quote was “No worrisome Lymph nodes”  cool.  That is means you cut it out, treat the area, watch and move on with much more regular monitoring.

Day 6 – 8:20 am we meet with the oncologyst who will be our long-term treatment manager post surgery.  She seems great. We are talking no nodes, ultrasound says 30-40mm something mm, MRI says under 20mm.  Hey the big donut to us was the better imaging, but they like to assume the bigger number.   So we are at T2 tumor stage.  We are talking about surgery to remove the tumor and preserve the breast.. All is good.  Heck the mammogram was clear two weeks ago.. so this type or cancer is hard to spot.

8:50ish – Head pops in the door.  “BTW since we didn’t ultrasound the nodes before, we just want to get some images tomorrow when you get the other breast biopsied.  It doesn’t mean anything”

I’m emailing my manger about “good news” .. we are smiling.. we take it out.. small chance it might not need chemo.. this is great news.

SAME DAY, Just one hour later - 9 something AM after the first team meeting to review everything. Wham we meet the radiation oncologist — WTF just happened?.. within minutes “The team has decided a mastectomy is reccomend.  Based on a further reading of the MRI and physical exam.. its looks to be closer to 8cm and there is a node that looks different but not clearly involved.   So they will ultrasound it and then decide if its needs to be biopsied.  So we are quiet and nodding and “ok.. good, yes uh ha.. that makes sense.. no we don’t have any questions”   In my head I do..” WTF just happened!!!”

I am all for good bedside manner, helping the patient keep the stress down… but WTF just happened?

Putting on my project manager / tester hat and doing process review, this is my best guess

Well meaning people without full data, were allowed to communicate with us BEFORE everyone had a clear picture and consensus of WTF is going on!!  Bad business process!  Not bad medicine. Just poorly managed communication.  People need to understand the value of the phrase “We don’t know yet” or in the case of the MRI.. don’t call us until the specialist have looked at it.  Talk to us in the meeting.  OMG someone actually wrote 10mm on an evaluation of the MRI.. Thank god they didn’t tell us that.  That’s T1..peice of cake!!  We are a T3 strong medicince coming!!  …it changed in less than a day and even less than an hour.

Because I do manage projects and I know that you need to run things in parallel we already have an appointment made last Monday to meet with Seattle Cancer Care Alliance for a few days from now.  This is a move from what is clearly one of the best programs in the area, to one of the best programs in the nation, so probably the world.  I already see they are running the process better.  Its a longer appointment, and it starts with “The Resident” talking to us, a skilled doctor who will gather the info our lead oncologist took while also kicking off the process. But it is less likely to include assumptions and setting expectations.  THEN the doctors meet and THEN we spend 3 hours with them.  Already I see better communication process.

Given the size of the external presentation of the lump, given the nature of this kind of cancer ….there was no need to have called us with the preliminary read of the MRI..  I am sorry we have a “worrisome” node.  It may not be clearly bad.. but its not “worry free” yet.  And please don’t send in an oncologist who is talking breast preservation and T1-T2 size numbers when we are 3cm into T3. The Husband is pissed.

Frankly since we have two breasts on the same person to compare in the MRI and Mamograhm when I saw them, there were clear differences and in a sizeable way.  I have no clue how the mamograhm got read as “Clear”… There was a big freeking shadow in ONE breast.  It wasn’t small calcium spots… But it was not clear.  Maybe the chart notes are bad, because they did send us for a biopsy off that mamograhm. And I have no clue how the MRI was noted as being under 2cm. It’s not round and unified.. but there is a large network of much denser tissue in one side.

It’s cancer and it’s breast cancer.. don’t let the generalist or one person reading the the image first call the patient when they already have a team appointment the next day.  And the DRs should meet BEFORE any talk of “where we appear to be going happens”.. Broken process creates pain.. and sadly I think our Oncologist who we met with first is wonderful person and doctor to work with. But we don’t trust her communication anymore and that’s sad because a better process probably would have let her shine more.

My view is any good marketing person or sales person from a reputable company that wants to keep that reputation always knows you under-promise and over deliver. We got just the opposit in the last two days.  What are they selling? trust and as much peace of mind as one can have.

WTF Just happened?

We have to deal with a mastectomy.  And that will be hard for Tina.  But I have already let her know that doesn’t change how I feel about her.  Not only do I love her for more reasons than the boobs :) I am physically attracted to her and turned on by her for many other reasons and I have told  her what those things are.. [ just not telling you :) ]

So, we move on… Where will we end up with the treatment?  I honesty don’t know… Tina likes and trusts the radiation oncologist and the surgeon we met with. So this screw-up in communication isn’t a deal breaker and fences can be mended. We are just disapointed.  So, as of yet are not changing our plans.. The second opinion was always scheduled and we will set a date for surgery with the surgeon we met today, Tina likes her.  But, we are still gathering info for choices and choice is power.

Yikes, there is that word again – cancer.  I’m waiting for my first appointment at the VM Cancer Center, and I’m nervous as hell.  We check in, check out the “Café” (it’s just a coffee area), there is Wi-Fi everywhere, and it’s surprisingly bright and friendly.  More friendly than my regular doctor’s office.  Don’t get me wrong, I have an idea what goes down here.  But it’s not as hospital-y as I thought.  Not quite the spa, but it feels kind of okay here.  I’ll keep you posted on how it goes after my first appointment.

Today is the big day, the day we meet with the team, and as excited as I was yesterday, today I am so nervous.