Disappointed, frustrated, sad, scared and a lil angry...

[jml]

Hi Friends~
I'm exhausted from a 9 hour day at my treatment center -chest mri, echo, onc consult, rad onc consult , lots of waiting- and so disheartened & unresolved about a plan to treat this chest node that has grown so much it now threatens my heart.
What do you do when you've been fighting this disease longer than some of the Dr's & residents have been in medicine? And they just don't get it...no sense of a patient fighting to preserve Quality of Life while we endure treatment after treatment, compromising, sacrificing, accomodating this nasty disease.
So tired in so many ways right now.
It's been such a difficult, bumpy year - All I wanted was a normal Christmas.
As this node has grown & progressively threatens my Superior Vena Cava and heart, I have been experiencing increased symptoms. So much so that the NP, who has cared for me for the past 9+yrs, suggested that if I had increased symptoms over the weekend that I go immediately to the ER and be admitted to hospital.
I was hoping to consult with an Interventional Radiologist today about stenting the SVC to mitigate the symptoms & keep me safe until radiation and systemic therapy can knock down this node, but that didn't happen.
Instead I wrestled with a Rad Onc Resident that couldn't keep up with my 3 page, 10.5 yr disease & treatment history as she interviewed/evaluated me and a Rad Onc that is so committed to her treatment recommendations that she wouldn't answer my questions about why we can't stent the SVC first, buying me a few extra days to preserve my holiday plans with my family, and start rads when I return from my trip.(Her response was, "My husband is an IR. Do you want me to ask him?")
Then after repeatedly telling me that the stent would only be symptomatic treatment while rads would shrink the tumor and relieve the symptoms (uh, hello, I KNOW that, as will systemic tx, but both will take time to kick in), I just acquiesced, agreed to sign the consent - which they noted that if I choose not to do rads that my "treatment options - stenting" WHAT?
She also then gave me her card to contact her tomorrow with my decision, then a few moments later said, "I leave for vacation tomorrow." And no, her card does not have her contact ph # or email.
The list of atrocities & confusion & unprofessionalism during that consult is so long, I can barely keep track.

The bottom line is I want this stenting procedure to buy me 15 days of normalcy, to enjoy the holidays with my family, then start rads after I return from my trip.
I just want a normal Christmas.
I often find that I compromise being decisive and clear about what I want bc I don't want to appear frivolous, demanding, non-compliant &/or disrespectful.

Am I being frivolous and demanding for wanting to prioritize QofL, even if that means an invasive (minimally however) procedure that only buys me 15 days, but will ensure that I don't progress into a crisis while we're waiting for rads or new chemo to kick in & do their jobs and give me and my family, at the very least, a non-disruptive, if not normal Christmas?

All of this could end up being a moot point, as only an IR can make the decision about whether or not I'm a candidate for stenting, but I need someone on my side to help me push for this.
Fighting "the system" is more exhausting than eduring chemo, radiation, et al.

Trying to keep the Faith~

Jessica

Dx-5/17/02 - 33 yo; Stage IV - L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
1/18/2012- 8 new spots in 8 weeks since last Brain MRI
one 2cm spot in brain stem, one 2cm spot in R temporal lobe.
No symptoms, THANK GOD!
1/25/12 – Start WBR x 15 rounds
2/10/12 – Oral Cytoxan WORKING! Melted supraclav node & undetectable by US!
2/14/12 – FINISH 15 rounds WBR
6/12/12- Continuing on oral Methotrexate BID & Cytoxan qpm, but on chemo break
for 3rd week due to low counts.
6/15/12 – Yay! Resume chemoJ
6/25/12 – Chemo break again due to low counts L
6/28/12 – PET Scan & Brain MRI this week…
NED IS BACK!!! NED in the HEAD, NED in the BODY!
10/26/12 – Still NED in the HEAD, but single troublesome node in chest, precariously close
to superior vena cava/heart. Not a perfect scan, but pretty darn good.
Maintain current treatment and Echocardiogram on 11/1 to keep an eye on node.11/1/12 –echo shows normal cardiac function J & node non-threating,
but experiencing symptoms of Superior Vena Cava Syndrome (obstruction/compression)
12/3 - hold cytoxan & methotrexate bc counts too low.
12/13-moved up PET scan due to increased SVC symptoms
12/14 –No more NEDL node progression causing increased SVC symptoms
12/17 – repeat echo & new chest mri for closer look…
Radiation to chest node recommended, change of systemic treatment pending

[StephN]

Dear Jessica -
This just sucks. I know how frustrated I was while being bounced from one specialist to another with my SVC symptoms. My med onc sent me to someone who (unbeknownst to her) had just left the group, so I had to find another person who "might" have a clue.

If you can get to a VASCULAR SURGEON, that is who finally did the right job for me. This is a specialist outside the oncology group. But I am not sure how you will get in to see a good one this close to Christmas. And A REALLY TOP person is who will understand.

Maybe if you can identify a good Vas. Sur. and go to their office first thing in the morning, you may get some sympathy. But this is such a tough week.

If you want something done ASAP, the IR is not the person.

You have all my good thoughts going your way to help you out of this horror.

[chrisy]

Wow Steph, great insight. Sometimes we get so caught up in onco-world we forget that there are sometimes even better"experts"

Jessica, you do not ask too much. I'm so sorry you had to waste so much time with that ignorant and overly arrogant RESIDENT. You deserve so much more respect than that.

I like steph's suggestion, and hope you can successfully pursue that or another path. Yes, this week is a "tough one" for scheduling, but remember it is also a week when the universe is preparing for a miracle.

Stay strong my friend. I hope you are right now getting a deep restful nights sleep and will awaken with renewed faith, strength, and resolve to find that door that is miraculously opening for you.

I don't know what made me write all that without any forethought and almost no crazy iPad spellcheck misadventures.

Much love,
Chris

[sarah]

You've a right to be angry and Stephanie's advice is spot on. I was going to suggest seeing new docs. I believe when you're that experienced about your disease and feel frustrated and confused, it means something's not clear or right and that means, you need new insight.
good luck
hugs and love
sarah

[Jackie07]

Jessica,

It is frustrating indeed.

Do you know anyone in the hospital or in the community who could talk to the medical board and get things going? Schools are usually off on the 18th. And I guess that's why people are ready for the holidays and don't want to schedule anything during this time period (from 18th to Jan. 3rd) unless it's an emergency. And I doubt anyone in the ER will be capable of doing the procedure. So going to ER will not work...

The first time I was having a major surgery - to remove the brain tumor - I was pushed around for a good 8 months until I changed my primary and then had a neurosurgeon who happened to be an acquaintance of mine. When I was getting my 2nd breast cancer surgery in 2007, it was another physician friend of mine who had helped push the date closer and avoided cutting into my pectoral muscle (the margin ended up to be 0.5 mm)

We've also dealt with lawyers - my boss in 1990 had contacted a lawyer who had won the best young lawyer award in our state a couple of years prior... From then on I became quite good at negotiating things with bureaucracy (while irritating a lot of people... Call the attorneys association or 'Legal Aid' (or similar consumer protection group) of your state and see what they can do.

Sending you good vibes.

[Lani]

jml where are you located? Maybe someone who lives nearby who participates on this board could make suggestions as to who they recommend you consult

...Worth a try!

[Mandamoo]

Argh! I can feel your frustration! I hope and pray you get answers and treatment soon.

[Redwolf8812]

My heart is breaking for you, Jessica. You are not being frivolous. It sounds like you're being quite reasonable. You are focused on your health and quality of life. It sounds like the RO was focused only on your health (and maybe her vacation). I pray she, and your entire medical team, see the big picture here, and you get to celebrate the Christmas you desire.

Fight & pray!

- Penny

[Mary Jo]

Jessica, I can offer no more than the others have said, but I did want to simply say that I am sorry you are having to go through all this. You are right in saying that those who treat us just don't understand. This is our LIFE. Fighting this system is just wrong. I pray peace for you today.

Love,

Mary Jo

[karen z]

Jessica,
For recommendations:
My internist (soon to retire and [I do not have a doubt] the best in the city is Maggie Mermin. She could recommend. My other primary team is Perry Ballard (medical oncologist) and William Barber (breast cancer surgeon). Both cancer folks are wonderful and helpful- both attached to Piedmont. I think Steph's advice is good as well as Chrisy's and others. Call and ask- this week is nothing like next week will be.
My best wishes, thoughts, prayers (and no you are not being unreasonable). Quality of life is not spoken about as much as it should be and not studied as much as it should be. But it is your life and you deserve some peace and happiness.
k

[Paty]

Dear Jessica,

I can feel your frustration and sadness in your post. I cannot offer any advice, but I want to let you know that I am so sorry that you have to go through this. I hold you tightly in my mind and spirit and I am praying that you find a solution asap, you deserve a great Holiday. All my love,

Paty

[jml]

Thank you my friends~
Your kind words have allowed me to finally release the frustrated, disappointed tears that I held back all day yesterday.
I talked to my onc's NP, who has become a friend last night and she ensured me that whatever I want, whatever I want to do, that she and my onc are behind me and will support my wishes.
She said to email her in the morning with precisesly what I want and need.So I did. I was clear and decisive and requested:
1) An IR consult to determine once and for all if I am a candidate for stenting.
2) Can it be done this week.
3) A consult with a different Rad Onc (one at a different location that I saw for supraclav rads in '08) and transfering my treatment under her care -essentially FIRING the arrogant RadOnc from yesterday, who incidentally just finished her Residency in 2011.

Time is of the essence so I told her I have cleared my schedule to be available to see the IR or the new Rad Onc whenever they're available, and will be prepared to wait for as long as needed to get in to see them asap.

I just want a normal Christmas...

Keeping the Faith~

Jml

[tricia keegan]

Jessica I'm coming in late here but can read the fatigue between your words and do hope you get to have that wonderful Christmas you long for with your family. xx

[BonnieR]

Good for you, stating clearly what YOU want and WHEN you want it! Continue to be "disrespectful, non-compliant" and all the other words you used because you are none of those things. . You are just trying to make yourself heard. These people work for you and they need to remember that. And you need to remember it too. I am so happy things seem to be turning around. You will have a good holiday. Keep the faith.

[CarolineC]

Hi Jessica,

I completely understand your frustration.

I have felt many times that my back is against the ropes and I`m not only fighting the cancer, but the system, and needing my voice to be heard, and that no one is in the corner of the ring with me.

It is absolutely frustrating and exhausting. The time and energy it takes to keep repeating yourself over and over again to new people or people that just don`t listen because they are the doctor and know more than you even though you have dealt with your treatments for 10.5 years is taking away from your soul and so stressful. Can`t they see that. I am glad that you have taken quick measures and are getting things in motion.

I hope you find alot of helpful direction ASAP in order for you to have the holiday you so need. I would like to send you a song, I hope you don`t mind, because you are an amazing woman, and you always tell us to keep the faith. http://www.youtube.com/watch?v=NG2zyeVRcbs

When it says about losing in the video I put a positive spin on it and think of losing bad cells, a treatment that isn`t working, or medical staff that don`t help us; just as you have done.

Caroline

[caya]

Hi Jessica,

Steph and the others have some great suggestions. I agree with Steph about going straight to the dr.'s office to try and get some sympathy, if you can.

Please keep trying, you deserve the best.

all the best
caya

['lizbeth]

Oh Jessica - even with all this terrible crap you are so strong and determined.

You are an amazing person. We are all praying for a Christmas miracle for you! May the stars align and the fires you lit to get what you truly needed work to allow you a NORMAL Christmas.

[Pray]

Gods blessings to you Jessica. Please know I am hoping and praying very hard that all will go the way you want it to. Peace my friend, Nancy

[NEDenise]

Jessica, my friend...
I can't stand the image of you wasting another moment thinking any of this mess was your fault!

I can state emphatically, and with 100%certitude that you were spot on!

You put your energy, and vast knowledge of your personal battles, into the equation, to get the best possible health and quality of life outcomes for yourself.

Anyone who doesn't see that and support it...is NOT worthy to be on the elite team that treats our Jessica.

I mean, c'mon do these people have any idea how amazing you've been, and for how long?

Do they have even an inkling about how many of us love you and send prayers and healing your way...
every, single day!

You're a Her2 Rock Star my friend!
Make sure you get exactly what you need...
and as much of what you want as you can pull off!

Sending HEALING, and Holiday Love, wrapped in miracles!
Denise

[karen z]

Jessica,
You rock..............as usual !
Be tough, funny and ......yourself........and demand what you need/want.
k