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Sunday, March 29, 2015

Perseverance

"Perseverance is not a long race; it is many short races one after the other." ~Walter Elliot

 We haven't posted for a week because we've had medical news to absorb and a decision to make. As many of you know, Les had his last three month scan and blood test on March 6th, 2015. The previous one was December 9th, 2014 and at that time everything looked great, including "a small lesion" on Les' left lung which was originally spotted in his scan of September 2013. At that time the Oncologist told us about this lesion and said it appeared to be caused by exposure to TB in Les' childhood. Apparently these are common over here in Britain amongst Les' age range. We were told by Dr. J. that it was "a lesion" and they would keep an eye on it in future scans.

 In all of Les' scans since then we were told the lung lesion was still there but no change was noted--until this last scan. So a Multi-disciplinary Team convened to discuss this occurrence and an appointment was made for us to meet with them last week, which we did. 

We were told that the lesions had not changed in size but had changed in shape. Then we were told that there are three lesions ranging in size from 7 mm, 5 mm, and 4 mm with an overall growth of 1 mm. I said this was news to us; we had been told initially that there was one lesion on Les' lung--not three. The Professor heading this team looked at the notes and replied, "No, there was no change in the amount of lesions, just the size," so I am pissed that someone, somewhere in all of this either lied to us about the amount of lesions, or instigated the culture of partial disclosure so common in cancer treatment and decided to be vague and merely say "A lesion..."

Then we were told that it is very common for colorectal cancer to metastasize from the liver to the lungs. News to us of course. Again, partial disclosure in operation. I asked why it is common and was told, "The liver is the first filter of the blood, and all blood travels from the intestines and colon to the liver to be cleaned. The second blood filter is the lungs and so errant cancer cells from the liver tend to travel to the lungs and settle there. From there the blood moves to the heart and is dispersed throughout the body." I asked, “The heart shunts this blood to the brain next does it not?" The Professor replied, “Yes."

 We were told that the lesions on Les' lungs were initially cavitated which means hollow--typical of TB induced lesions. Now they are filling up with mass which suggests, given Les' medical history, that it is cancerous tumor mass. That said we were also told that they did not know for sure that this was actually the case. It could be benign mass--there is no way to know without a surgical biopsy. 

I asked about Les' CEA blood tests. A carcinoembryonic antigen (CEA) test is a blood test used to help diagnose and manage certain types of cancers, especially cancer of the colon. The test measures the amount of CEA present in the blood. If you already have cancer, this test helps a doctor determine if the treatment for the cancer is working. An antigen is a harmful substance that is released by cancerous tumors. If you are receiving treatment or have had surgery for a previously diagnosed cancer, a higher amount of CEA in your body suggests that the cancer has not gone away. It may also mean that cancer has spread to other parts of the body. 

A normal level of CEA is less than or equal to 3 nanograms per milliliter (ng/mL). Most healthy people have levels below this amount. If the cancerous tissue has been successfully removed, CEA levels should return to this normal amount after about six weeks. Elevated levels of CEA (higher than 3 ng/mL) are considered abnormal. The levels are higher than 3 ng/mL in many types of cancers, but that in itself does not necessarily mean you have cancer. Higher levels can be found in non-cancerous disorders such as infections, cirrhosis of the liver, smoking, and inflammatory bowel disease.

Very high levels of CEA (higher than 20 ng/mL) in patients who also have symptoms of cancer strongly suggest that cancer has not been removed successfully even after treatment. It may also suggest that the cancer has metastasized (spread to other parts of the body).  

Les' results were 2.2ng/mL which is in the normal range and the team was impressed by Les' overall very good general health--something seldom often seen in cancer patients who have been through over a year of diagnosis and treatment.  

We were then given four options:
1. Do nothing and the RFH (Royal Free Hospital) team would continue to monitor Les' health every 3 months.
2. Begin chemotherapy treatment.
3. Refer Les to Brompton Hospital (Chelsea, London) Thoracic Center for an exam by a Thoracic Specialist, who could recommend lung surgery or who could just as likely tell Les he is not a candidate for lung surgery at this time as the lesions are too small.
4. RFA--Radio Frequency Ablation--a procedure which requires Les be put under General Anesthesia while a Radiologist inserts Needle into his lungs, guided by Ultra sound or PET scan. High frequency Radio waves travel through the needle and cauterize or burn the lesions and some surrounding lung tissue away. 


Les has determined that the first two options are of no interest to him. Pursual of option three will be very time consuming, taking anywhere from 3-6 months for everything to fall into place due to the mountain of paperwork, general NHS bureaucracy, changing hospitals and still after all of that we could be told Les is not a candidate for surgery.
   
Les has chosen option four. 

We don't know yet all the side effects and risks associated with RFA with the following exceptions: lung collapse can occur during or following the procedure; lung infection can result; breathing to some degree may be impaired due to permanent lung damage caused by ablation. (The same is also true for lung surgery which would remove a fair amount of his left lung); some cancer cells may still escape and continue to colonize Les' body. As we have already seen, surgery does not guarantee this will not occur and neither does Chemotherapy or radiation. In fact we were told by Oncologist Dr. J in September of 2013 that if Les agreed to the short course of five days or radiotherapy (which he did) then the treatment would "guarantee metastases would not occur." Basically with cancer all bets are off and there are no guarantees no matter which treatment route one chooses. 

RFA is done under general anesthetic, and the patient stays overnight in hospital but not Intensive care. Sometimes 48 hours in hospital is necessary. We were told the pre-op and treatment should all be over within four weeks. The recovery time is shorter than for general surgery and less damage is done to the lung overall. Les' research on the 'Net indicates that RFA has a success rate of up to 90% when lesions are found early.

Les here: I let Jaq explain the medical stuff as she wraps her writer's mind around it and explains it better than me. Our cruising has now slowed to stay within the requirements of our license while also staying near towns and cities with railway stations for travel back to London for this treatment. 

I am planning a new roof box for wood which will move our solar panels on top of the wood boxes and free up needed roof space. We bought our boat paint and plan to do the job ourselves over the coming summer. I am not giving up and I don't feel defeated. We take each day as it comes, and make the most of every chance to laugh, have fun, and enjoy each other. I fully intend to be around to fill the wood box and see the boat looking clean and tidy with it`s new coat of paint. Mr. C. is very persistent but I am not about to roll over and surrender; it`s not what boaters do. Our next blog will be back to boating, canals, and this life we love. We are not going to let Mr. C take over the blog, either. 

17 comments:

Carolyn said...

Oh my gosh. What news to have to take in. I am sending all my love to you both. And I know from reading your blog that sheer determination to carry on as normal and enjoy each sunrise and sunset and bucketfuls of positivity will bring you through this journey. If I could wrap a big bear hug around you I would. take care. Carolyn NB:Carapace

Ian and Karen said...

Dear Les and Jaq,
Our thoughts and prayers will once again be with you as you face yet again a difficult time together. What a blessing to have each other with the love, happiness and support that brings.
Take care both of you,
Karen and Ian x

Anonymous said...

oh CRAP :-( and YEA too :-) !!. Lousy news and options but fantastically forward looking and with a fighting spirit.

Didn't know RFA were done in the lungs ...Jim and my sister had it done in their hearts to burn nodes that were misfiring.

I hope spring is coming over there across the pond ... longer and nicer days brighten the spirit. Both of you take care of yourselves. What a huge amount of stress and it's being going on for so long.

As I've said many a time Life is what happens while you are busy making plans ... but please keep making the plans.

You are loved here in Pullman - Karen

Sue said...

Aghhhh just when you thought the worst was over.

My love and thoughts are with you both. Keep fighting both of you xxxxx

Nev Wells said...

Les tell us about the roof boxes while Mr C gets his coat, ...you have the very best medicine, laughter and love.

Nev Nb Percy

Bryce Lee said...

Mr. C. is an unwelcome persistent pest. Have encountered him twice and have had more than enough chemotherapy for two or three people. He just keeps returning, or in my case Celulitus and its variants. Once one is in the grasp of the medicine men they never, ever let go.

Geoff and Mags said...

Oh no, not again. Glad to see you're both upbeat about it. Thinking of you both.

Jaqueline Biggs said...

Carolyn,
Many thanks for your love and good thoughts. It all helps. We look forward to hearing all about your airhead installation and hope we have a chance to meet on our boats someday and we will collect that bear hug!!
JaqXX

Jaqueline Biggs said...

Karen and Ian,
Thank you! We believe positive thoughts and prayers count and make a difference. We so appreciate yours on our behalf.

We also count ourselves fortunate indeed to have found each other and to enjoy this wonderful life together.
Love JaqXX

Jaqueline Biggs said...

Hi Karen,
Spring has sprung here in Jolly Ole' England, albeit with very high winds and temperamental weather. Instead of March coming in like a lion and out like a lamb it is doing the reverse!

We've heard from quite a few folks who've had RFA procedures for a number of health issues. And we so appreciate all the article links you've sent us about various things.

Glad to know we are loved across The Pond;we love you too--Gobs and bunches!
JaqXX

Jaqueline Biggs said...

Darling Sue,
We will keep fighting and it makes such a difference to us to know folks like you and Vic are also fighting in our corner. Here's to catching up with you both some day soon.
Love Jaq and LesXX

Jaqueline Biggs said...

Nev,
a full blog post will; be forthcoming all about the wood boxes and the boat pint job. It is strange to think it could be cancer in my lungs because I don't feel sick--I feel terrific as yo say thanks to all the best medicine, love nd laughter Jaq provides.
LesX

Jaqueline Biggs said...

Bryce,
We know you walk this path along with us just as we walk it with you. We carry you in our hearts and you carry us in yours--although we've never actually met in person. How lucky we are to live in age that allows such friendships to occur.
Love Jaq and LesXX

Dave,Beryl Bradshaw said...

If anyone can beat this it has got to be you two. Best wishes keep smiling Luv Beryl & Dave.Sokai

nb.bobcat said...

So - looking on the bright side.

Don't forget a kingfisher came to visit you, that must mean something.

All the best
Love
Kath
nb.bobcat

Anonymous said...
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Anonymous said...

Gutted to hear this news Les but your determination is strong and you have a great lady beside you. I will keep you both in my thoughts. love
carol BV

NB Valerie & Steam Train by Les Biggs

NB Valerie & Steam Train by Les Biggs