It’s been 5 years since I saw a scalpel (….but my surgeon is still on speed dial)

im-still-here

5 years ago today, 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 round 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.

Side effects

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 to avoid 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 3mm 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.

Thanks for reading

Ronny Allan

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Neuroendocrine Cancer: Nodes, Nodules, Lesions

www-cancer-gov_publishedcontent_images_cancertopics_factsheet_sites-types_metastaticA fairly common disposition of metastatic Neuroendocrine Tumours (NETs) is a primary with associated local/regional secondary’s (e.g. lymph nodes, mesentery and others) with liver metastases.  Technically speaking, the liver is distant. However, many metastatic patients have additional and odd appearances in even more distant places, including (but not limited to) the extremities and the head & neck.  In certain NETs, these might be an additional primary (e.g. in the case of Multiple Endocrine Neoplasia (MEN); or they could even be a totally different cancer. The worry with NETs is that the ‘little suckers‘ can sometimes make these surprise appearances given that neuroendocrine cells are everywhere!

Cancer doesn’t just spread through the blood steam, it can also spread through the lymphatic system. This is a system of thin tubes (vessels) and lymph nodes that run throughout the body in the same way blood vessels do. The lymph system is an important part of our immune system as it plays a role in fighting bacteria and other infections; and destroying old or abnormal cells, such as cancer cells. The lymphatic system also contains organs, some of which feature regularly in NETs.  If cancer cells go into the small lymph vessels close to the primary tumour they can be carried into nearby lymph glands where they stick around. In the lymph glands they may be destroyed (that is actually one of the jobs of the lymph glands) but some may survive and grow to form tumours in one or more lymph nodes.

diagram-of-the-lymphatic-system_3
The Lymphatic System

I also had the usual bulky chains of lymph node metastases in or around the mesentery that frequently appear with an abdominal primary (in my case the small intestine). These were all removed as part of my primary resection. However, I knew since shortly after diagnosis in 2010 that I had ‘hotspots’ in my left ‘axillary’ lymph nodes (armpit) and my left ‘supraclavicular fossa’ (SCF) lymph nodes (clavicle). These were found on Octreoscan but at the time, they were not pathologically enlarged – just ‘lighting up’.

In early 2012, 15 months after removal of primary and 10 months after liver resection, one of the axillary lymph nodes became palpable (signs of growth) and this coincided with a small spike in Chromogranin A.  A total of 9 nodes were removed very shortly after this surveillance, 5 of which tested positive for NETs (Ki-67 <5%).  As part of the same operation, 5 SCF left clavicle nodes were removed but tested negative.  On a subsequent Octreoscan, the armpit was clear but the clavicle area still lit up.  However, there is no pathological enlargement or pain – so this is just monitored.

I have a 3mm 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.

thyroidI 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.  I attend an annual Endocrine MDT where this is monitored with close coordination with the NET MDT. 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.  That said, my thyroid blood tests are abnormal and on 20th March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the thyroid panel results indicating hypothyroidism. Levothyroxine is a thyroid hormone replacement.

Early in 2017, during my Endocrine MDT, a surveillance ultrasound spotted a slightly enlarged lymph node on the right side (measuring 9mm x 9mm) described as a ‘level 4’ node (a location indicator meaning the ‘lower jugular group’).  The report was passed to the NET MDT for their consideration with the surgical rep on the Endocrine MDT recommending a conservative approach – the NET MDT agreed. I suspect that’s right, it’s still below the worry threshold, nothing is palpable (no lumps) and I don’t have any specific symptoms.  There could have been a number of reasons for the enlargement and it might even be back to normal size on my next scan. Hopefully just a non-issue. All my issues have been left-sided to date, so this was interesting. That said, I did have an MRI last year to investigate pain and a swelling at the site of my right ‘sternoclavicular’ joint – subsequently declared a non-issue.

Life as a metastatic Neuroendocrine Cancer patient is interesting and efficient surveillance is absolutely critical.

You may enjoy my post “Living with Neuroendocrine Cancer – 6 tips for conquering fear”

Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

 

Does your body now have an extra organ? The MESENTERY

mesentery-rectangle

One of the very first words I heard at diagnosis was the word “Mesentery“.  In the news today is the announcement that is now might just be a new organ following accepted findings from research conducted in the University of Limerick Ireland. I always knew it was something which held the small and large intestines in place within the abdomen so like many others, I just thought it was some kind of membrane type structure and I also knew there was some kind of interaction with the peritoneum, another word which I was to become familiar with.

This is an important area for NET patients as many will have mesenteric involvement in their disease.  I’ve read reports of a primary mesenteric tumour although it’s mainly a site for secondary disease (metastasis).  It’s no surprise when you consider the geography – the small and large intestines are inextricably linked to this new organ. There is pancreatic involvement too. The mesentery contains many lymph nodes (the main place for metastasis for small intestinal NETs and other types) and has important blood vessels adding complexity to surgery. It’s also a place where there’s likely to be fibrotic reactions (desmoplasia) from the excess release of serotonin which can also complicate surgery.

When I check my own records, I can see statements such as “mesenteric disease”, “bulky mesenteric nodes”, “further nodal disease situated on the superior mesenteric artery and vein” and “dense retroperitoneal reaction encircling his aorta and cava from just below the level of the superior mesenteric artery”.  When I also look at the post surgical reports, I can see that I had something called a “mesenteric root dissection” which needed a “superior mesenteric vein reconstruction”.

So there you have it, the anatomic description that had been laid down over 100 years of anatomy was incorrect. This organ is far from fragmented and complex. It is simply one continuous structure.  According to the article I read, medical students started being taught that the mesentery is a distinct organ and the world’s best-known series of medical textbooks, Gray’s Anatomy, has even been updated to include the new definition.  Finally, so what you might be thinking?  Here’s a quote from the person who led the work:

“The next step is the function,” Coffey explained. “If you understand the function you can identify abnormal function, and then you have disease. Put them all together and you have the field of mesenteric science … the basis for a whole new area of science.”

Reference material:

http://www.sciencealert.com/it-s-official-a-brand-new-human-organ-has-been-classified

http://www.chicagotribune.com/lifestyles/health/ct-mesentery-new-human-organ-20170104-story.html

https://www.ul.ie/research/blog/irish-surgeon-identifies-emerging-area-medical-science

Thanks for listening

Ronny

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Surgery for NETs – Chop Chop

Carcinoid liver tumour debulking
Liver tumour debulking

At the end of 2014, I was feeling pretty good celebrating 4 years since my first ‘big’ surgery in 2010. It prompted me to write an article Surgery – the gift that keeps on giving. In that particlar article, I really just wanted to say I was grateful for the early surgical treatment and as I was just about to spend another Christmas with my family, I was reminiscing what a wonderful gift it was at the time. Other than some detail of the surgery, I didn’t get too technical, I just wanted to generate a thankful and festive mood. However, a recent private message from a subscriber prompted me to study the current benefits of surgery for Neuroendocrine Tumours (NETs) in more detail just to ensure my understanding was still in line with best practice.

It’s very well known that NETs can present a major challenge to physicians in their recognition and treatment requirements.  For example, NETs can cause various syndromes, not only for requiring treatment for primary and loco-regional tumours to minimise the risk of abdominal complications and future growth; but also for removal of tumour including iver and other metastases to palliate hormonal symptoms. Some tumours can be quite large and require extensive surgery to remove.

I searched reputable websites and European and North American NET treatment guidelines to find that surgical treatment of these tumours still appears to remain an important intervention, not just for curative treatment (where this is possible) but also for symptom palliation and survival. Although more treatment modalities are available than ever before (e.g. radiotherapy including PRRT, liver embolisation, liver ablation, somatostatin analogues and other new drugs, some with chemo combinations), surgery still appears to be the mainstay treatment to be offered when it is appropriate.  For some it isn’t appropriate or will be held in reserve for watch and wait scenarios or as ‘adjuvant’ treatment downstream. On paper, it appears to be the only current option for a curative scenario if the cancer is caught early enough.

I had an amazing surgeon with an impressive CV in Neuroendocrine disease.  He believes in early and aggressive surgery (within normal guidelines) and always in conjunction with other treatment modalities and only when required.  I found a video of one of his lectures which you may find useful.  Another surgeon who talks with knowledge and passion is Dr Pommier and one of his videos can be viewed here. I’m sure there are many others.   They are different characters but they both seem to believe in getting as much tumour out as early as possible and also emphasise that sometimes it can be too risky so the focus moves to other treatment.  Both presentations provide statistical evidence that debulking/cytoreductive surgery can often offer a better outlook even for those with advanced neuroendocrine disease.

I think I have a soft spot for surgeons – they also seem to love their job despite it being particularly ‘gory’.  On the subject of ‘gory’, I recently came across another surgical video which I found totally fascinating.  This one contains amazing footage of real surgery and if you are like me, you will find this very educational. It’s also fairly recent (2014) so perhaps offers more up to date techniques. It’s also a very well structured presentation. Some of you might have seen it before and some of you could even have even been at the presentation! If you don’t have time, skip forward to approximately ’19 minutes’ and watch them take out large and small tumours of the liver using a technique called enucleation!   (Click here to watch).

Hope you enjoyed this session as much as I enjoyed writing it!

Thanks for listening

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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