Sunday, July 3, 2011

Is This Radiation Necrosis?

Confronting!

Painful

'Feelings like disappointment, embarrassment, irritation, resentment, anger, jealousy, and fear, instead of being bad news, are actually very clear moments that teach us where it is that we're holding back. They teach us to perk up and lean in when we feel we'd rather collapse and back away. They're like messengers that show us, with terrifying clarity, exactly where we're stuck. This very moment is the perfect teacher, and, lucky for us, it's with us wherever we are'
-Pema Chodron


The past 10 days have certainly kept me out of mischief with appointments and tests taking up any spare time, as well as keeping me away from the keyboard. 'Dr Amazing' continues to 'amaze.'

Who would have believed that, in the Public System, I would see my Oncologist, Physiotherapist and have PET Scan within 4 working days? Truly Amazing! On the fifth day I had my first phone call regarding the results.

Dr Andre has kept me well informed with phone calls each day, including updates. When he called me Wednesday he had just received the written report on the PET Scan. He was actually in Taree, which is probably 3 hours travel from the hospital at which he consults. He opened the conversation by asking if I had time for him to read the report to me. How cute is that? On listening to the report, I felt deflated and let down, wondering if this clavicular lesion is indeed recurrence of my original breast cancer or radiation necrosis as suggested by one of the doctors at the Mater Hospital at the time of my PET Scan.

I have chosen to go through my medical files over the past few days and, interestingly, I find that the lesion pictured above above is the very one that appeared within one month of completing a heavy dose of radiation. The MRI at that time had shown 'appearances consistent with amorphous infiltration of the right thoracic outlet involving muscles, brachial plexus and vascular encasement and axillary lymphadenopathy.'

While 'Dr Amazing' is concerned at what appears to be spread to several new areas, I now find it has been there, according to test results, in tests requested by my radiation oncologist. I will now be asking Dr Andrea to review all copies of the reports and reassess my situation. Taking a wild guess, I would say that, had my radiation oncologist referred me back to a medical oncologist, my current circumstances may well be different.. I was certainly disadvantaged, I would say, by the fact that my medical oncologist [ married to my radiation oncologist] has been off on maternity leave for over twelve months. Of course, this had to happen to me during that time.

According to mythology 'It's not over till the fat lady sings' and I have not yet heard her sing. Haha..

In the meantime, Cheryl is consoling herself with copious amounts of coffee, cookies and chocolate.



24 comments:

Kaz said...

Chez you shouldn't be going thru what you are if all had taken care of you in the first place.It seems there never listen to you.so glad for Dr. Amazing .

Will be thinking of you tomorrow as you go for the appt.heck i think of you everyday.

Love Kazzy.xo

Sue in Italia/In the Land Of Cancer said...

Have they definitely told you that this is radiation necrosis versus skin mets?
If it is radiation necrosis (which it certainly appears to be) have they discussed hyperbaric oxygen treatment? It has been approved for this indication in the US but not sure if it is in Australia.

Mmmm..chocolate. I've been giving chocolate a wide berth in the hopes of fitting into a reasonable size dress in 7 weeks. On my post, say yes to the dress, the first dress pictured is what I am going with.

In the meantime, I hope Dr. Amazing comes up with an amazing plan.

Julie Goodale said...

Like fat ladies when they're silent! Enjoy those cookies.

BreastCancerSisterhood.com said...

Chez,
Like Sue, I'm not sure whether this is radiation necrosis or metastasis. Regardless, you continue to be in my prayers. This is more than anyone should have to deal with.

Love,
Brenda

Anonymous said...

My thoughts are with you Cheryl and I pray Dr Amazing continues to amaze!!
~Edwina xx

Emmy said...

Here's to hoping the fat lady never sings ;)I am glad to see u are being to positive now and just taking it easy, assessing everything! God bless you

Starry said...

oh my gosh Chez, you have got to try these Australian handmade chocolates made by my friend on etsy. She has a new store, and overnights your chocolates to you anywhere in the world.
if you want the direct link let me know, but she is on etsy, www.etsy.com under the shop name of Cricklewood Chocolate.
I can recommend the Milk Chocolate, Cardamom and Sweet Dukkah
as well as the White Chocolate, Butternut Pumpkin and Cinnamon (which is like biting into a chai latte flavoured custard)
mmmmm
and I got mum (for her birthday today) a boxed set of Dark Chocolate and Rhubarb Hearts.
Yep,
chocolate eating is surely a worldwide phenomenon.

also my very best healing wishes to you, and love, xoxoxox Starry

Cheryl said...

Kaz, really don't know what to think anymore. I do know that tests indicated problems both during and shortly after radiation in June 2009 and nothing was offered.
Where to from here? Only time will tell dear friend♥
Live, Laugh and Love♥

Cheryl said...

Sue, I really do appreciate your comments; you 'nail' it every time. I asked 'Dr Amazing' to be honest with me regarding my lesion as I had followed up the Hyperbaric Oxygen and availability in Australia. Although he did not confirm the diagnosis, he did say I should definitely make enquiries about the treatment. Think he may even do the same, although it is not yet considered to be a 'conventional' treatment here.
Look forward to checking out the number you have chosen for the wedding.
Live, Laugh and Love♥

Cheryl said...

Thanks Julie. Not too easy to gain weight while on the heavy medications.
Live, Laugh and Love♥

Cheryl said...

Brenda, it has been difficult for me to accept this, although, over time, I am learning to have faith and believe that I am exactly where I am meant to be.
Always in my thoughts and prayers lovely lady. Wishing you peace in your heart as you continue your journey.
Live, Laugh and Love♥

Cheryl said...

Edwina it is lovely to have you to share the journey my friend.
Live, Laugh and Love♥ always

Cheryl said...

Sweet Emmy, thank you for your kind words and thoughts. The journey is a little like being on a roller coaster. Can only do it because I have you and others to share the ride.
Live, Laugh and Love♥

Cheryl said...

Starry, a valuable recommendation my friend [especially at this time.]
Will check it out and ask for your help if I have any difficulties.
Thanks for always being here to share the ride my dear friend.
Live, Laugh and Love♥

Emmy said...

Hi I have an award for you waiting at my blog, please pick up when you have time :)

rama said...

I am praying that Dr. Amazing continues to study your case properly and comes to a right decision and guides you in the right direction. Keep thinking All is well and it would be well. And don't stop enjoying doing the things that you love to do.Always wishing you the very best, Rama.

Cheryl said...

Thank you so much Emmy. I feel honoured xo

Cheryl said...

Thank you Rama. I have a very powerful group of Prayer Warriors with my healing in their sights and I always remain optimistic that healing is there for the taking. The Bible says 'Ask and you shall receive.'
Dr Amazing is wonderful, however, I am not sure I really want his type of poison at this time. I feel so dead set against chemotherapy for me. Thanks for your kind words my friend xo

nancyspoint said...

Chez,
I continue to be amazed at how openly you share and in doing so you really help others. I love how Dr. Amazing asked if YOU had time to listen to the report! Sometimes it's those little things that mean so much. Good luck going forward. And that fat lady can just keep quiet for a long time yet! Thinking of you...

nollyposh said...

Dear Cheryl, You attract wonderful people like Dr Amazing because *You* are amazing... Thankyou so much for taking the time to pop in on me, you really are a lovely person... Together strong (((Hugs))) x

River said...

That looks terribly terribly painful. Gag that fat lady.

Cheryl said...

Nancy, you are so right about the 'little' things making a difference. Dr Amazing really does that for me! He seems to have the same affect on all of his patients. My 'sharing' is like 'halving' my problems and I love the support of those that take the time to share this journey.
Love and gratitude while we wait to hear the fat lady sing :)

Cheryl said...

NollyPosh that is truly a beautiful explanation for Dr Amazing and my amazing 'Blog Buddies' who so lovingly share the journey. Thank you for making a difference♥

Cheryl said...

Doing my best to gag her River. Yes! It is painful and is spreading. Unfortunately!