In 2012, I had a bunch of lymph nodes removed. Two separate areas were resected, only one was showing growth but both were showing up as hotspots on an Octreoscan. I had known since shortly after diagnosis in 2010 that ‘hotspots’ were showing in my left ‘axillary’ lymph nodes (armpit) and my left ‘supraclavicular fossa’ (SCF) lymph nodes (clavicle area). Some 10 months previously, I had a major liver resection, and 5 months prior to the liver resection, I had a small intestinal primary removed including work on some associated complications. There had always been a plan to optimise cytoreduction of my distant metastases, it was just a matter of timing. I still can’t get my head around why metastases from a small intestinal NET managed to get to this area but not others!
Distant nodal metastasis treatment
A total of 9 nodes were removed from my left armpit (a very common operation for breast cancer patients). The surgeon had inspected the area and found some were palpable and my normally stable Chromogranin A marker was showing a small spike out of range. During the same operation under general anaesthetic, an ultrasound-directed SCF nodal ‘exploration’ was carried out. When biopsied, 5 of the 9 resected axillary nodes were tested positive (Ki-67 <5) but the 5 SCF nodes removed were tested negative. The subsequent Octreoscan still lit up in the left SCF area but the lights on the left axillary area were ‘extinguished’. There is no pathological enlargement or pain in the left SCF area – so this is just monitored.
Apart from a very faint scar in the left SCF area, there does not appear to be any side effects from this exploratory surgery. The left axillary area cut is well hidden by hair growth, but I do sense a lack of feeling in the area. Additionally, I have a very mild case of lymphedema in my left hand which occasionally looks slightly swollen – the consequences of cancer and its treatment. Fluid build-up, or post-operative seroma, can be a side effect of a lymphadenectomy. In fact, within a month of the operation, I had to have circa 160mls of fluid removed on 4 occasions from my armpit. It was uncomfortable and painful, resulting in additional time off work. The surgeon used a fine needle aspiration to draw out the fluid, a painless procedure. It eventually cleared up and everything was back to normal. The specialist said my left arm would be slightly more susceptible to infections and suggested avoiding using my left arm for blood draws and other invasive procedures and injuries.
Other close calls (“to cut or not to cut”)
I have a 19mm thyroid lesion which was pointed out to me in 2013. This has been biopsied with inconclusive results. Although the thyroid is an endocrine gland, it looks like a non-NET problem so far. Thyroid nodules are in fact very common and statistically, 50-70% of all 50-70-year-olds will have at least one nodule present (i.e. if you are in your 50s, there is a 50% chance you will have one nodule and so on). The vast majority will never bother a person while they live. I attend an annual Endocrine MDT where this is monitored in close coordination with the NET MDT. It’s actually managed by the same surgeon who carried out the nodal work above.
I have a 2-3 mm lung nodule, discovered in 2011. Apparently, lung nodules are a pretty common incidental finding with 1 per 500 X-rays and 1 per 100 CT scans finding them. This is monitored and hasn’t changed since noted.
You may also be interested in my post “Neuroendocrine Cancer – to cut or not to cut”
I watch and wait but I also watch and learn. Make sure you are under some form of surveillance.
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional as they are not members of the private group or followers of my sites in any official capacity. Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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4 thoughts on “It’s been 10 years since I saw a scalpel (….but my surgeon is still on speed dial)”
Another great and informative post Ronny! I may have to mention the lymph node under my arm as it’s been noticeably palpable for several months.
Yes you should!
Your blog is very informative. My primary was a tumour in my small intestine and went to my liver they also removed numerous lymph nodes from my vascular system. My question is how often should I have a Octreoscan? I haven’t had one since my original one that found my cancer.
..and that’s a great question because I have never been able to find a definative answer! I had 3 since diagnose and I had to push for the third one. I felt vindicated as it spotted some uptake in my thyroid.
The UK NET guidance states:
Follow-up and assessing response to treatment
The role of follow-up imaging and optimal imaging frequency depend on clinical circumstances and tumour grade. The modality of choice should be that which best demonstrated the tumour at diagnosis. Thus, SSRS imaging is recommended for tumours known to be SSTR-positive, supplemented by CT and MRI where necessary. Follow-up for SSTR-negative tumours relies on MDCT or MRI.
The follow-up interval depends on the rate of growth of the tumour. Initially, follow-up imaging may be taken at 3–6-month intervals. If the disease is relatively slow growing, the interval can be increased to 9–12 months. In slow-growing tumours, particularly in younger patients, MRI may be used for follow-up in order to to reduce radiation exposure to the patient. In the context of clinical trials, standardised criteria may be used to assess response, although these remain imperfect for the evaluation of NETs. Functional MRI techniques, including diffusion-weighted MRI and dynamic contrast-enhanced MRI, are currently being evaluated.