I wanted to write this blog to help us through the times ahead and to provide our families and friends with updates as we know they are all thinking of us and would want to know.
I apologise in advance if its not very well written!!
Most of our very close friends and family know by now that my hubby Dave has been diagnosed with Cancer!! Yes that dreaded disease!!! I strongly feel its like Terrorism, so unnecessary to have in this world we live in right now!!!
I apologise in advance if its not very well written!!
Most of our very close friends and family know by now that my hubby Dave has been diagnosed with Cancer!! Yes that dreaded disease!!! I strongly feel its like Terrorism, so unnecessary to have in this world we live in right now!!!
Sometimes people find it hard to ask how you're going too as they think they are bothering you but actually they are not. Its always nice to hear from people. Particularly hearing someone else's voice apart from your own in your head or your immediate family around you. Chatting also puts everything into perspective and can be a nice distraction from your own world and find out what else is going on around you.
This blog I hope will open up channels of communication with others around the world and to help them and their loved ones come to terms with what they, God forbid, may have to go through with this similar diagnosis, outcome and what lays ahead. Also for us to find guidance from others that have also gone through this too.
This blog I hope will open up channels of communication with others around the world and to help them and their loved ones come to terms with what they, God forbid, may have to go through with this similar diagnosis, outcome and what lays ahead. Also for us to find guidance from others that have also gone through this too.
To cut a long story short... Dave’s cancer is a P16 positive squamous cell carcinoma (SCC) located in the lymph nodes on the right side of his neck. While it is still a cancer of unknown primary (CUP), it is suspected that the primary is in a tiny spot located at the base of his tongue near the epiglottis. Its at stage 3. Totally curable :-) Plus we have picked it up early so were on to a winner already!!
This type of cancer is becoming a bit of an epidemic from what I am picking up too which is very unnerving!! We know of two people around us that have gone through it recently. One friend is three years through it and the other approximately seven weeks on since going through six weeks of radiotherapy and chemo!! Both are on the up now which is great news.
This type of cancer is becoming a bit of an epidemic from what I am picking up too which is very unnerving!! We know of two people around us that have gone through it recently. One friend is three years through it and the other approximately seven weeks on since going through six weeks of radiotherapy and chemo!! Both are on the up now which is great news.
From here on in is how we got to the diagnosis above.
We both first noticed a lump on the right side of Dave's neck in late February this year when we were living back in New Zealand. We got it checked out by our local GP who said it could be an enlarged, or reactive, lymph gland due to the sinusitis and viral infections we were both getting over. However as this was only on one side of the neck, and Dave had a history of thyroid cancer, the GP referred him to get an ultrasound and also gave Dave a course of antibiotics (in case it was just an infection). Yes that’s right Dave has beaten thyroid cancer - 11 years ago!!!! I will go into this a little later on to give you the background.
This ultrasound was inconclusive, so while still in New Zealand Dave had the lump biopsied by Fine Needle Aspiration (FNA) under a second ultrasound.
This ultrasound was inconclusive, so while still in New Zealand Dave had the lump biopsied by Fine Needle Aspiration (FNA) under a second ultrasound.
We returned to live in Australia, permanently at the beginning of March 2016 and got the biopsy result after we had moved back. The result was clear and consistent with lymphadenitis (an inflamed lymph node due to infection)!!! We were so relieved, as you can imagine!!
We registered ourselves at the local Doctors where we had recently moved back to. We both explained our health history to our new GP who was very thorough and made us both feel at ease. We gave him a copy of the biopsy result that we had sent over from our GP in NZ. Dave got a referral to an Endocrinologist, Dr Shaun McGrath MBBS (UNSW) Hons 1 FRACP, in our area as part of his annual check up cycle following his Thyroid cancer.
Dave was also given another course of antibiotics for the lump on his neck and was told if it hadn't gone down in two to three months then he should have a further follow-up. Dave received notification of an appointment in late July with the endocrinologist shortly after this.
All was going well, but the lump on the right side of his neck had not changed so he contacted the endocrinologist in mid May and explained the situation to see of they could bring his appointment forward, they were kind enough to change this to the 2nd of June.
Thursday 2 June 2016
Dave went along on his own to the Endocrinologist as it was just a routine annual check-up, or so we thought. Dave explained his history with Thyroid cancer and his concern about the lump on the neck that had not gone away.
The practice was well equiped with an ultrasound machine which was great, so the Dr. was able to ultrasound Dave's neck straight away. Unfortunately the ultrasound showed up several other lymph nodes with lumps which were not visible to the naked eye or able to be felt by hand!! The Dr. was concerned that the Thyroid cancer had come back and spread to the lymph nodes. He took FNA biopsy samples to check for thyroglobulin (a marker for the presence of thyroid cells) on the original lump and one of the lumps lower in Dave’s neck, along with a second sample on the lower lump to check for cancer cells. These needed to be sent away to the pathology lab for analysis … the agonising wait begins!!!
If it is thyroid cancer then we were hoping that treatment would be similar to the last time where the lump was removed surgically. If necessary an ablative dose of radioactive iodine to kill any remaining thyroid cells can also be given, something Dave didn't need last time as the surgeon did a wonderful job in removing the tumour and there was no evidence it had spread to his lymph nodes in radioactive iodine scans performed both at the time of the original treatment and again in 2008.
Friday 3 June 2016
Today Dave had to drive to Sydney for the day, for work. While I pottered around home and gardened. Nothing too exciting to report. Trying to keep busy to block out the bad thoughts in my head!!
Saturday 4 June 2016
Yay its the weekend!!! Dave enjoyed his game of golf with the boys while I went walking with my group. Always great to catch up with everyone and a coffee at the end for a reward! The rest of the day we did stuff around the house.
Sunday 5 June 2016
We just chilled today and mulled things over and did lots of research!!
Monday 6 June 2016
The practice was well equiped with an ultrasound machine which was great, so the Dr. was able to ultrasound Dave's neck straight away. Unfortunately the ultrasound showed up several other lymph nodes with lumps which were not visible to the naked eye or able to be felt by hand!! The Dr. was concerned that the Thyroid cancer had come back and spread to the lymph nodes. He took FNA biopsy samples to check for thyroglobulin (a marker for the presence of thyroid cells) on the original lump and one of the lumps lower in Dave’s neck, along with a second sample on the lower lump to check for cancer cells. These needed to be sent away to the pathology lab for analysis … the agonising wait begins!!!
If it is thyroid cancer then we were hoping that treatment would be similar to the last time where the lump was removed surgically. If necessary an ablative dose of radioactive iodine to kill any remaining thyroid cells can also be given, something Dave didn't need last time as the surgeon did a wonderful job in removing the tumour and there was no evidence it had spread to his lymph nodes in radioactive iodine scans performed both at the time of the original treatment and again in 2008.
Friday 3 June 2016
Today Dave had to drive to Sydney for the day, for work. While I pottered around home and gardened. Nothing too exciting to report. Trying to keep busy to block out the bad thoughts in my head!!
Saturday 4 June 2016
Yay its the weekend!!! Dave enjoyed his game of golf with the boys while I went walking with my group. Always great to catch up with everyone and a coffee at the end for a reward! The rest of the day we did stuff around the house.
Sunday 5 June 2016
We just chilled today and mulled things over and did lots of research!!
Monday 6 June 2016
Dave went off to work and I got up early and joined my walking group and coffee afterwards. Being Monday its washing day for me so stripped the bed and did all my washing and cleaning. Still trying not to think about the biopsy outcome!!!
Tuesday 7 June 2016
Dave got a call at 8:15am from Dr McGrath who notified him that the results contained cancer cells. While this confirmed Dr McGrath’s suspicions from the ultrasound, he was still waiting on the result of the thyroglobulin test which could only be done in Sydney, so unfortunately we had no idea what type of cancer it was or what we were dealing with!!!
Dave immediately telephoned me at home to let me know…. what a shock that was, I can say!!! I was numb all over!!! Dave also phoned his close friend Craig to let him know the news as he has been great support to us both over the years.
Dave left work early that day as you can imagine a thousand and one things were going around in his head!!! As soon as he got home we just hugged, and hugged it out!!! Both totally speechless!!
Dave left work early that day as you can imagine a thousand and one things were going around in his head!!! As soon as he got home we just hugged, and hugged it out!!! Both totally speechless!!
Dr McGrath referred Dave onto an ENT Specialist for further investigation who called later that day to confirm an appointment on Tuesday 14 June 2016. So a long waiting game was ahead!!! Plus it was June Queen’s Birthday long weekend.
Thankfully we already had planned to go away for the June long weekend with close friends, Pete, Cam and their gorgeous German Shepherd, Bentley to Patonga Beach and to the batch they had hired for the week. Though we are only going for the long weekend. Looking forward to escape!
I went off to pilates in the evening to try and take my mind off things and what lays ahead!! Picked up Margaret on the way and had a good chat about what was going on.
Wed 8 June 2016
Dave got another call at work from Dr McGrath who notified him that the results were negative for thyroglobulin so unfortunately we still had no idea what type of cancer it was or what we were dealing with!!!
The endocrinologist was convinced it was going to be related to Dave’s previous thyroid cancer at the time so was only testing for thyroglobulin to confirm this. We were now on the hands of the ENT to help with the diagnosis and treatment.
Thurs 9 and Fri 10 June 2016
Dave went off to work as norm!!! God knows what's going through his head right now!!!
I know I was finding it pretty tough going, so can only expect its ten times worse for Dave!!
The next few days were pretty tough going as we both advised a couple of our very close friends and family know what we were dealing with!! Dave also let his boss know about the diagnosis as it was likely Dave will need time of work for treatment.
Most of the days for me were quite a blur!!! A lot of it sitting with a cuppa tea staring out the window and crying!!! I'm also starting to go through menopause which is not helping either!!!
I tried to get out and about walking during the week to keep my fitness up and get lots of fresh air. I find walking helps with my mental state of mind. I shut off and just listen to the birds around me.
I have so much going through my mind whirling away like a hurricane!!! I'm sure Dave does too!!
Queens Birthday Weekend, Sat 11, Sun 12, and Mon 13 June 2016
Thankfully we already had planned to go away for the June long weekend with close friends, Pete, Cam and their gorgeous German Shepherd, Bentley to Patonga Beach and to the batch they had hired for the week. Though we are only going for the long weekend. Looking forward to escape!
I went off to pilates in the evening to try and take my mind off things and what lays ahead!! Picked up Margaret on the way and had a good chat about what was going on.
Wed 8 June 2016
Dave got another call at work from Dr McGrath who notified him that the results were negative for thyroglobulin so unfortunately we still had no idea what type of cancer it was or what we were dealing with!!!
The endocrinologist was convinced it was going to be related to Dave’s previous thyroid cancer at the time so was only testing for thyroglobulin to confirm this. We were now on the hands of the ENT to help with the diagnosis and treatment.
Thurs 9 and Fri 10 June 2016
Dave went off to work as norm!!! God knows what's going through his head right now!!!
I know I was finding it pretty tough going, so can only expect its ten times worse for Dave!!
The next few days were pretty tough going as we both advised a couple of our very close friends and family know what we were dealing with!! Dave also let his boss know about the diagnosis as it was likely Dave will need time of work for treatment.
Most of the days for me were quite a blur!!! A lot of it sitting with a cuppa tea staring out the window and crying!!! I'm also starting to go through menopause which is not helping either!!!
I tried to get out and about walking during the week to keep my fitness up and get lots of fresh air. I find walking helps with my mental state of mind. I shut off and just listen to the birds around me.
I have so much going through my mind whirling away like a hurricane!!! I'm sure Dave does too!!
Queens Birthday Weekend, Sat 11, Sun 12, and Mon 13 June 2016
Yay so excited on Saturday morning about heading off to Patonga Beach on the Central Coast to catch up with Pete, Cam and Bentley and to try and escape from everything for the weekend.
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| we could only get to the batch by boat! Pete & Bentley go first! |
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| Us next... Dave my hubby on the left in the cap, Cam and me. |
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| Our batch is the third from the left |
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| SkipBo Challenge! |
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| View across to Barrenjoey Point Lighthouse |
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| Bentley in action |
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| Dave contemplating! |
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| Reflection! |
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| A Selfie! |
Tuesday 14 June 2016
Off to visit the ENT Specialist, Dr Robert L Eisenberg MBBS FRACS (ORL-HNS).
Dr Eisenberg examined Dave with an endoscope, down the nose and into the back of the throat but everything looked fine and he couldn’t see anything untoward. Which was a huge relief!!
His suspicion was that Dave was unlucky to have developed a second cancer (unrelated to his previous thyroid cancer) and that this was caused by the Human Papilloma Virus (HPV) which is becoming a common cause of cancer.
Because of this Dr Eisenberg suggested that Dave get a positron emission tomography (PET) scan. This is a type of imaging test. It uses a radioactive substance called a tracer to look for disease in the body. A PET scan shows how organs and tissues are working and involves an injection of radioactive glucose in the body. The glucose concentrates in cancer cells as these have a higher uptake of sugars over normal cells, with a scan taken to show any ‘hot spots’.
Wednesday 15 June 2016
Dave had work meetings in Sydney over two days so I took the opportunity to go with him to take my mind of what we were going through and it also gave me a chance to catch up with a couple of close friends too. First up coffee with my ex boss Ruth whom is also a great friend. Then I had a wander around the shops and caught up with my darling gorgeous friend Janice for lunch. She said all the right things to me and put me on the right track!! I love you sweetheart xxx Time to go and check in at the Amora Hotel and relax for a little while. I love the Amora, its such a handy hotel to everything in Sydney and has great facilities too.
While in Sydney we got to enjoy Vivid, which was great as we hadn't been for a few years. Our friends Shan, Brian, Tom and Maree from the Hunter drove down and joined us too which was terrific as neither of them had ever enjoyed the Vivid show before. So it was really nice showing them around. Tom & Maree's daughter Jacqui joined us too.
Between wandering around we popped in for a bite to eat and drink at the Munich Brauhaus at The Rocks...
His suspicion was that Dave was unlucky to have developed a second cancer (unrelated to his previous thyroid cancer) and that this was caused by the Human Papilloma Virus (HPV) which is becoming a common cause of cancer.
Because of this Dr Eisenberg suggested that Dave get a positron emission tomography (PET) scan. This is a type of imaging test. It uses a radioactive substance called a tracer to look for disease in the body. A PET scan shows how organs and tissues are working and involves an injection of radioactive glucose in the body. The glucose concentrates in cancer cells as these have a higher uptake of sugars over normal cells, with a scan taken to show any ‘hot spots’.
Wednesday 15 June 2016
Dave had work meetings in Sydney over two days so I took the opportunity to go with him to take my mind of what we were going through and it also gave me a chance to catch up with a couple of close friends too. First up coffee with my ex boss Ruth whom is also a great friend. Then I had a wander around the shops and caught up with my darling gorgeous friend Janice for lunch. She said all the right things to me and put me on the right track!! I love you sweetheart xxx Time to go and check in at the Amora Hotel and relax for a little while. I love the Amora, its such a handy hotel to everything in Sydney and has great facilities too.
While in Sydney we got to enjoy Vivid, which was great as we hadn't been for a few years. Our friends Shan, Brian, Tom and Maree from the Hunter drove down and joined us too which was terrific as neither of them had ever enjoyed the Vivid show before. So it was really nice showing them around. Tom & Maree's daughter Jacqui joined us too.
Between wandering around we popped in for a bite to eat and drink at the Munich Brauhaus at The Rocks...
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| Cheers Shan!! |
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| Dave & Brian... Proste! |
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| Tom & Jacqui... cheers! |
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| Jacqui, Maree and me |
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| Dave & I... we had to shout as loud as possible to light up the heart... I just screamed I love you... it seemed to work!!! |
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| Sydney Opera House with the Harbour Bridge in the distance |
Dave got pretty tired walking around. We did walk for a few hours stopping and starting, looking at everything! I must admit my feet were aching but I had been walking around all day!!
Thursday 16 June 2016
Dave went off to work and let a few of his work colleagues know of his diagnosis during the day. Coincidently this was also the day that his project held their morning tea to raise money for the Cancer Council as part of the biggest morning tea event.
I caught up with Shan and Brian for breakfast. Brian then drove back to the Hunter on his own while Shan and I went off shopping!!! I needed to pick up a few things from Ikea for our home and I also wanted to have a look around the outlet shops at Homebush. I did pretty well driving us around the big smoke!!! Thankfully we had a good sat nav in the car!! Picked up Dave at 3.30pm then drove back to the Hunter. Pretty shattered when we got home, so early night was had by all.
Thursday 16 June 2016
Dave went off to work and let a few of his work colleagues know of his diagnosis during the day. Coincidently this was also the day that his project held their morning tea to raise money for the Cancer Council as part of the biggest morning tea event.
I caught up with Shan and Brian for breakfast. Brian then drove back to the Hunter on his own while Shan and I went off shopping!!! I needed to pick up a few things from Ikea for our home and I also wanted to have a look around the outlet shops at Homebush. I did pretty well driving us around the big smoke!!! Thankfully we had a good sat nav in the car!! Picked up Dave at 3.30pm then drove back to the Hunter. Pretty shattered when we got home, so early night was had by all.
Friday 17 June 2016
Dave’s appointment for his PET scan was at 2.15pm at the Newcastle Mater Hospital at the Nuclear Medicine area. Dave worked from home and I had a relatively relaxing morning, though can’t fully remember what I did it all feels quite a blur!!
Dave had to fast from midnight prior too!! Only being allowed a sip of water to take his daily medications.
We picked up Shan on the way in, as moral support. Shan is more like a sister to me than a best friend. The drive is approximately 45 mins from our home to the hospital and its mostly on a freeway so a relatively easy drive in. Dave drove to try and take his mind off things!
It was great having Shan with me, the wait was awful!! The duration of the test was only three hours but it felt like more!! Hate to think what was going through Dave’s mind at the time!!!
Shan and I were going to go off for a little drive and shop, but I just couldn’t stomach it, so we enjoyed a cup of tea and talked. Also sat in the little chapel close by in the hospital and prayed together too. I'm not a religious person but do find it quite comforting at the moment. I also picked up a lot of literature from the Cancer Council stand to better understand what might lay in the journey ahead.
Dave had to fast from midnight prior too!! Only being allowed a sip of water to take his daily medications.
We picked up Shan on the way in, as moral support. Shan is more like a sister to me than a best friend. The drive is approximately 45 mins from our home to the hospital and its mostly on a freeway so a relatively easy drive in. Dave drove to try and take his mind off things!
It was great having Shan with me, the wait was awful!! The duration of the test was only three hours but it felt like more!! Hate to think what was going through Dave’s mind at the time!!!
Shan and I were going to go off for a little drive and shop, but I just couldn’t stomach it, so we enjoyed a cup of tea and talked. Also sat in the little chapel close by in the hospital and prayed together too. I'm not a religious person but do find it quite comforting at the moment. I also picked up a lot of literature from the Cancer Council stand to better understand what might lay in the journey ahead.
I asked Dave what went on he said 'he was taken to the preparation area where he was weighed and had a cannula inserted. He was then taken into the room where the cannula was connected to a machine that injected a measured amount of radioactive glucose based on his weight, after which he got to watch Judge Judy for about 45 minutes while the solution worked its way around his body. Just as Judge Judy was about to get to a verdict he was taken through for his scan.' I bet that bugged him not knowing what the verdict was!!!
Dave said the scan machine was very similar to a CT scanner, as it does both a CT and PET scan at the same time so the images can be overlaid. The scan itself took about 10 minutes, then after another five minutes he was given a copy of the scans on DVD.
Even though Dave was only having a scan done I was still really pleased to see him afterwards!
Dave said the scan machine was very similar to a CT scanner, as it does both a CT and PET scan at the same time so the images can be overlaid. The scan itself took about 10 minutes, then after another five minutes he was given a copy of the scans on DVD.
Even though Dave was only having a scan done I was still really pleased to see him afterwards!
As this test was on a Friday, again we must wait anxiously over the weekend until Monday or Tuesday for the results!!!
Sat 18, Sun 19, and Mon 20 June 2016
The weekend was the norm, playing golf on Saturday for Dave, walking club for me and just pottering around the house. Nothing overly exciting. Though Dave did decided to work from home for a couple of days.
Tuesday 21 June 2016
The weekend was the norm, playing golf on Saturday for Dave, walking club for me and just pottering around the house. Nothing overly exciting. Though Dave did decided to work from home for a couple of days.
Tuesday 21 June 2016
The ENT specialist phoned us today and advised us that the PET scan results confirmed cancer in the right neck lymph nodes but still did not confirm a primary site, Thankfully the cancer wasn't anywhere else in Dave’s body!!
It is possible that Dave’s immune system might have dealt with the primary cancer, which is not uncommon.
It is possible that Dave’s immune system might have dealt with the primary cancer, which is not uncommon.
While we still didn’t know the primary site, it was highly likely it was somewhere in Dave’s throat so Dr Eisenberg then recommended Dave get his tonsils removed so they could be biopsied, along with further biopsies within the mouth and throat region. He also mentioned that the endocrinologist was happy to see Dave next Tuesday to take more FNA biopsies on the lymph nodes if the tonsillectomy biopsies didn't show anything. The tonsillectomy was scheduled for tomorrow, so no time to think about it!!
Dave was nil by mouth from 11pm.
Dave was nil by mouth from 11pm.
Sample images from Dave's PET scan that show the cancer in one of his lymph nodes and the suspected site of the primary at the base of his tongue:
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| The bright spot at the base of Dave's neck is one of the lymph nodes with the cancer |
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| A cross section view showing the same lymph node |
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| The bright spot at the base of Dave's jaw is the suspected primary site at the base of his tongue |
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| A cross section view showing the same spot at the base of his tongue |