The Facts and The Conclusions

'It is not a question of God allowing or not allowing things to happen. It is part of living. Some things we do to ourselves, other things we do to each other. Our Father knows about every bird which falls to the ground, but He does not always prevent it from falling. What are we to learn from this? That our response to what happens is more important than what happens. Here is a mystery: one man’s experience drives him to curse God, while another man’s identical experience drives him to bless God. Your response to what happens is more important than what happens.'

–Chip Brogden

A picture tells a thousand words. If you notice the region between the arm and the wound, you will see that it is fluid filled and very inflamed, causing a great deal of pain and discomfort. There is a concern that with little movement of fluid, cellulitis is a potential risk.

I have decided to do a review of test results and findings. This will provide an overview of the disease, and its progression, allowing me to summarise at a later time.

Fact: When Haydn and I retired in July 2008 there were plans to farm, socialise and travel; and not necessarily in that order.

Fact: Although Haydn had owned the land for approximately 20 years, the new house was built with a view to living comfortably in retirement. All of these things take money; we thought we were prepared for all possible outcomes.

Fact: It was only a matter of weeks before I began suffering debilitating pain; pain that had me watching television from the couch throughout the night while walking down the driveway screaming in agony during the day. Pain that prevented me from attending local Tai Chi and yoga classes as a way of exercising and meeting people.

Fact: It April 2009 that I was eventually referred to a Consultant Neurologist who recognised my suffering and requested a MRI. I was prescribed Oxycontin and Lyrica [pregabalin] for the pain.

Conclusion: Appearances consistent with amorphous metastatic infiltration of the right thoracic outlet involving muscles, brachial plexus and vascular encasement with axillary lymphadenopathy.

Fact: Radiotherapy was the only treatment offered. At no time was I told of the potential for secondary cancer as a result of treatment. Due to the severity of my pain, I failed to do my own research. I was told that the recommended dose would minimise the risks and maximise the benefits given that the area could not be re-radiated. I accepted that it was to be done in 'good faith,' therefore I chose to place my trust with the doctor.

This picture was taken well before the end of treatment as Haydn refused to take pictures as my flesh began to burn like a blowfly on a barbecue.

Fact: Approximately 5 days before last scheduled treatment I went in as usual and prepared myself to be 'zapped.' It was then I was told by the lovely Mel to put my clothes on again. She proceeded to hold my hand as she took me with her to the Nurses' Station where she abused them for allowing me to go home the previous day without receiving, what she called 'appropriate' treatment for the burns. More importantly, she asked why my Radiation Oncologist had not been notified of the damage. There were sparks flying. In hindsight, maybe the 'good' doctor could have reviewed the situation.

Conclusion: I think it is obvious. 

Fact: In May 2009 my Radiation Oncologist referred me for a CT of Neck, Chest, Abdomen and Pelvis.

Conclusion: Tumour recurrence at about the level of the surgical site extending through into the root of the neck. Malignant lymph nodes in the right axilla. Oncologist made no recommendations. It now appears this may have been the beginning of the secondary soft tissue cancer, resulting from radiation damage.

Fact: In January 2010 a CT of the Neck and Chest resulted in evidence of a new soft tissue lesion which arrived anterior to the right first costosternal joint. Lesion measures 15 x 17mm.  Commenced Arimidex [Aromatase Inhibitor] At this time the increasing nerve pain in my right arm/hand had effected my ability to function normally in the home. Domestic duties, previously undertaken so easily, had now become difficult. Much of the fun of cooking was gone. I was also thinking seriously about life on the farm. No longer able to drive a motor vehicle due to prescribed medication and disability, I began to feel 'trapped.' It was my blog 'buddies,' Memory-of and Facebook friends that allowed me to have the friendships lacking in real life. Fatigue was an issue as talking on the telephone wore me out. I felt deserted by friends that found the 180km 'round trip' from Newcastle just too far to travel. Once again, we were disadvantaged by the isolation.

Fact: In February 2010 a PET Scan noted several foci of increased FDG uptake within the upper arm/chest, including 3-4 lymph nodes. A large right jugular node was also noted. Increased uptake noted in several nodes throughout the right chest wall.

Conclusion: There are several right upper arm and chest lymph nodes, including a contralateral left tracheobronchial lymph node, which are consistent with malignant disease. The Referring Physician was the same Radiation Oncologist who, at no time, recommended further treatment.

Fact: In April 2010 a Right Arm Venous Doppler showed a chephalic vein thrombosed over a 9cm segment.

Fact: Comparison PET Scan - by now radiation damage from treatment and testing puts me at increased risk.

Conclusion: Comparison with February 2010 PET-CT scan demonstrates significant reduction in intensity of activity in the persisting nodes in the right axilla, right neck and right parasternal Aromatase Inhibitors.

Fact:  In January 2011 'Dr Amazing'  requested a Radionuclide Bone Scan.

Conclusion: No evidence of boney metastases.

Fact: CT Neck, Chest, Abdomen and Pelvis

Conclusion: Increasing size of right supraclavicular lobular masses with associated bone destruction.

Suspicious change in the area of right inferior lung scarring which may reflect further benign change or small mass.

Post surgery right axillary changes mostly due to radiotherapy with also a suspicious nodal metastasis which has not enlarged.

Fact: In May 2011 Neck CT shows previously noted left supra-clavicular adenopathy with a solitary nodule measuring approximately 6mm remains relatively unchanged.
The right medial clavicular mass has enlarged and now measures approximately 4.3cm x 19.5cm in transverse and AP dimensions. Again underlying permeative bone destruction of the medial clavicle and its cortical margin is noted.
CT Chest - same date compare to January study. There is an ill-defined soft tissue stranding in the axilla which was previously noted and is unchanged.  A nodule in the right pectoralis is likely secondary to post radiation effects.

Conclusion: The right supra-clavicular lobular mass with associated bone destruction has increased since the previous scan.

Fact: In June 2011 Dr Amazing requested a PET scan which showed an avid FDG uptake in the right chest wall lesion which now measures 67.6mm height, 53.5mm at greatest width and 20.7mm. There is a periosteal invasion with FDG uptake in the right medial clavicle. Immediately lateral to this lesion there  is a small FDG avid nodule in probably a subpectoral site.   
There are at least three further lesions in the anterior chest wall from the nodule to immediately anterior to the liver.

Conclusion: Today's scan is consistent with FDG avid malignancy in the right chext wall, axilla, superior mediastinum and right axilla. There is no definite evidence for FDG avid disease in the right brachial plexus (light at the end of the tunnel)

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.



Confirmation of What?

'Whenever a doctor cannot do good, he must be kept from doing harm'

- Hippocrates

Regular readers of Indigo Dreaming would be aware that 'Dr Amazing' saw me on Wednesday of last week. Friday I received a phone call informing me of today's PET Scan appointment.

Being only short notice, the instructions for the scan had been given verbally. Haydn had written them on the back of a newspaper that went into the recycling bin the following day. As he had a 10.45am doctor's appointment himself, he dropped me at the hospital and went on his way. Knowing that I had to fast for six hours I was suspicious when Haydn said that he had been told I could drink tea, coffee and water. Before ordering my cappuccino I thought it wise to check with Nuclear Medicine. I was disappointed to learn that my cappuccino was on hold until the completion of my test which would be well after 3pm.

Staff were wonderful as usual! The nurse did weight and height before inserting the cannula. She then called the doctor who would ask me the routine questions. I mentioned that I had a clavicular lesion which appeared to be something 'different.' She was happy to have a look. I felt empowered when she asked me if it was radiation necrosis. I believe it was confirmation of what I had always suspected, in spite of the Radiation Oncologist being in denial.. The problem for me now is that I have no idea of where to from here. Tonight I asked the question of Professor 'Google' in the hope of finding answers to what appear to be unanswerable questions.

My understanding is that 'Dr Amazing' will have results by Wednesday.

'Change Starts When Someone sees the Next Step' - William Drayton

'Change is the essence of life. Be willing to surrender what you are for what you could become.'

- Author Unknown

Thursday morning arrived; we were up early in readiness for our departure to attend my 8am appointment with the Physiotherapist at the Mater Hospital. Leaving the farm before 7am left me sufficient time to pop my head into the radiotherapy waiting room. I wanted to check if my Sister and Brother-in-Law were there. B-I-L Brian is currently undergoing radiation, following hormone treatment for prostate cancer. Unfortunately, our paths did not cross on that day.

I headed upstairs and waited in anticipation of Judith's arrival. Her face broke into a smile when she recognised me. Interestingly, my file was not available, due to my appointment with 'Dr Amazing' as Emmy now has me referring to him. Shortly, there was a knock at the door heralding the arrival of my file. I was impressed! The Mater is a huge facility. It is very easy for things to go missing, which was the case with my scans recently. They did not reappear for months.

Judith noted that it was 14 months since my last appointment.  I was happy to give the explanation that her instructions were always clear, allowing me every opportunity to undertake practise on my own. With a home based programme, along with regular Tai Chi and Yoga classes, I have been successful in my efforts to keep the swelling under control. It is only when changes occur that I get myself into trouble. This appeared to be one of those occasions.

It was a surprise, and somewhat of a relief, to hear her say the lower arm was surprisingly soft on examination. A good starting place!  We have learned from experience that manual lymphatic drainage is not necessarily a good thing for me owing to a case of cellulitis following treatment with another therapist. During the examination, she was able to check areas that would be effected by spread to the brachial plexus. She did speak to me as she worked, noting both good and not so good points.

I let her know that Dr Andre wanted her to call him at the end of our consult. The hour went quickly. I felt comfortable to question her on her findings, asking her about her 'report' to 'Dr Amazing.' She did say that in spite of the 'positives' she was concerned about many issues.

At lunchtime on Friday, Haydn and I had gone downstairs to our vehicle when we heard the telephone ringing upstairs. There was no way we could make it back up in time to answer it so we made the decision to let it go to Message Bank. It was then the Cell Phone began to ring however, it was in a bag on the rear seat. Oh well! Time to attend to those calls on our return. That was not to be! The upstairs phone rang again; Haydn went bounding up the stairs three at a time. He called loudly to inform me that it was the Mater Hospital advising me of an appointment had been made for a PET Scan. As I headed upstairs the Cell Phone started again. This was getting to be ridiculous! This time, breathing heavily, I answered it to hear the voice of 'Dr Amazing.' He too was ringing to let me know about my upcoming PET Scan. My mind was ticking over. This sounds like 'serious' stuff.