Good news at the our sarcomas specialist yesterday and the histology report was good. Hooray!
Essentially the histology work studied the microscopic structure of the tissue excised in the operation and they were especially interested in areas of margins including spine. There is no evidence that there was any cancer in spine, now or ever, and they essentially confirmed that the original soft tissue cancer site is clear.
So earlier we got a clear reading that there was no secondary metastasis to lungs and now with the clear reading on primary tumour site we now move into NED status. NED is a cancer survivors term. not medical term, and a status that we all what to get to.
Can the Cancer return to primary or secondary location. Yes I am still high risk and will be monitored every 3 months. Overtime the risk reduces and frequency of tests will reduce. Big parties at 2, 5 and 10 year marks.
Discussed chemo briefly and its referred to another specialist in Mr B's team and a consultation another day.
Also he reaffirmed that physical recuperation was as expected and that it will take months to recover from. This has been a massive operation to core of body and to take recovery steps in 6 week windows. Currently no Physio allowed, gradually increasing light walks, aqua jogging and excercycle in a few weeks.
So in light of this great milestone I would like all my creative friends to put in some thought for an "I am NED" graphic and I planning to use the favourite design on a T-shirt &/ or hat, plus all entries sent will be posted on the blog.
My journey: Living with and overcoming Synovial Sarcoma. A rare and nasty Cancer. Not a how-to guide but ideas and observations during my experience so far. There are only a few SS survivors publishing and I've found their information helpful and reassuring. The site is also to update my wonderful supporters on my progress. Image above was pre-diagnosis by my daughter of the 'Alien Baby'. This tumour has been removed but the battle to eradicate the disease continues.
Excellent news!
ReplyDeleteFantastic news Gary! Go NED! :)
ReplyDeleteGreat Christmas Present...
ReplyDeleteWow! You and Kat were so in my thoughts yesterday and that is such brilliant news. Good now to be able to focus on those 6 week healing blocks.
ReplyDeleteSarah and I are thrilled for you. I could see the relief on your face on plane last night it is just BLOODY FANTASTIC news.
ReplyDeleteAbsolutely stoked for you and family Gary.
ReplyDeleteThat's awesome! Congratulations.
ReplyDeleteWell Done Gary - thats brilliant news.
ReplyDeleteEnjoy the Christmas break!
Cheers,
-Allan Smallie
well done you auld dog....pleased to hear you will be joining me at the old dad aqua jogging. love to all Ts from all GWs
ReplyDeleteCongratulations! I hope you remain a NERD (No Evidence of Recurrent Disease) forever!
ReplyDeleteElodie
That is such excellent news, Gary. May you continue to go from strength to strength.
ReplyDeleteLove & best wishes, Tessa & Vic xxx
Guys thanks for all the comments, the support we have through this has been overwhelming and it certainly helps and feels good when you are in a situation like this. At times when its been really tough I think and visualize about what would my family and supporters would say to lift me up and get a flood of comments and warm faces in my mines eye. Try it out.
ReplyDeleteWe have receive a few questions like is the cancer gone and why the tests going forward. The histology report on my back is based on sampling and so they get degrees of confidence not certainty, also it's on material extracted not what's in there. Also with secondary cancer they sort of know which tumours are dangerous and which are likely to travel to another location in the body and unfortunately my tumour is one of those and they view that I have a high risk for secondaries with the most likely location for them to develop being my lungs. But I now have had 2 tests on my lungs and they haven't been able to find anything to date. But what they are looking for is tumour growths not cancer cells. Apparantly we dont have technology to detect cancer cells just clusters. Detection to me seems pretty primitive, there are no markers or indication for the presence of cancer, they are looking for black spots or highlighted (through tracers) spots on grainy X-ray or CT images. These are thousand or millions of cancer cells that are now out of control in your body. So think about it as your garden, you are unable to detect specific weed seeds nor also when they are small germinating plants, but when they get bigger you can recognise them and then an do something about it, like rip them out or poison them. Primitive but that is basically how it works. So today medically they can find "No Evidence of Recurring Disease" at primary tumour site, plus as the 2 lung scans were also clear "No Evidence of Disease", NERD and NED on same day. So this is the best possible news at this stage but unfortuantely the cancer journey continues, although this major milestone give us further confidence that we are on track, plus that we have the personal resilience, team and what it's takes to overcome whatever gets thrown at us. But it may also mean "no weeds and no seeds" and time may show that we are completely through this. The cancer is relatively slow growing so a second or multiple sites could take some time to develop, also it can rest or stay dormant for many years 10+. But today we celebration as we appear to be on the right track to complete recovery.
ReplyDeleteGary - only heard of all of your news last week, and checked today for an update - fantastic! It is because of you initially believing in me that Pivot is now a team of 12 people and going great guns in Aussie. You have been continually in my thoughts this last week. Will keep checking in on you, hoping to connect if in Chch or Dunedin. Kia Kaha.
ReplyDeleteGood luck with it all. My daughter was diagniosed with synovial two years ago when she was 16, she is now heading towards her eighteenth and has just under gone VATS to remove three nodules (left lung), which were'nt there three months ago. One of which did turn out to be a secondary synovial in her lungs near her heart, In two weeks she will under go another VATS on the right lungs to remove a small secondary we have been watching now for 5 months... Glad you are going well ..One day I hope my daughter will be able to enjoy being a NERD <3
ReplyDeleteAnon - I hope the operation goes well for your daughter and that she achieves NED. Such a difficult age for her to go through this. Don't rule out chemo as a systemic flush through, its unpleasant but good evidence that it has a positive effect on synovial. It has had a dramatic affect with a guy I am going though treatment with including eliminating spots on lungs.
ReplyDelete