British Lung Foundation
35,376 members42,742 posts

I have seen the surgeon.

This morning I had an appointment at the Thoracic Unit and had a meeting with the surgeon. Not good news, my existing health problems give me 40% risk of not surviving surgery and a 60% chance of ending up wheelchair bound and being on supplementary oxygen if I did survive the op. Whilst he did say that they are willing to perform the operation I did not like those odds at all.

So Radiotherapy is the next option for me. The waiting goes on for the next appointment.

Needless to say, I am rather gutted after hyping myself up for a cure via an operation to remove the tumor.

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Hi So sorry to hear that - I bet you're really down now after the possibilities fell away. I am not sure I would have the courage to make the choice you have just had to make and I hope that should it come about that I have to then I hope I can be as brave as you are.

I hope all goes well from now on and that the Radiotherapy is a huge success.

Andrew

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I'm so sorry 2greys . This must be disappointing and not the news you anticipated. I hope the radiotherapy goes smoothly. Take good care.

Cas xx 🌹

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I’m not surprised you are gutted sweetheart and my heart goes out to you. I am so hoping they will come up with some possitive treatment for you 2G.

Healing hugs

Cx

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Very disappointing 2greys but I hope the radiotherapy proves helpful.

Wishing you strength and good fortune. Xxxx

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Not good and I am so sorry. Fingers cross the radiotherapy works as well. Thinking of you 2greys. x

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So very sorry to hear your news ,no wonder your gutted

Take Care

Dorothy

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Not the news you wanted but I am hoping the outcome is a good one nonetheless. Thanks for letting us know.

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If they can't cut it,and as you say.those odds are just to long to risk the knife,then let them Zap it.a burn instead of a slash should ultimately achieve the same result and with your skills in production engineering they will probably let you control the linear accelerator and you can beam on in there 2g's and get rid of your unwanted lodger..........good luck and rapid treatment mate..............Skis and a cat in a lead suit.xx

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don't mind me 2 g's just talking to myself and having put my foxy research head on i have given this radiotherapy malarky a good coat of looking at as i am sure you have,it all looks very impressive and doable,all be it a bit time consuming dependant on the amount of sessions required and all without the nasty side effects of chemotherapy.obviously you are going to suffer fatigue and of course anxiety to a certain degree but the results and success rates seem good and you will be left with a lot of nasty cells whose broken dna links will render them useless as an agent for cancer,you may even find a secondhand market for them.Yes i am feeling very positive for you mate i can see this working for you.......cheers Skis and a cat that won't be able to keep up with you xx

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Good post.

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2greys - I am and have been humbled by the way you have fought this disease, your post have always motivated me to try harder and never quit. I wish I could return the favor now when you need it. The best I can do is pray that the Radiotherapy works . Best of luck and please keep all of us informed.

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Thinking of you Sweetie. Yes, we hype ourselves up for a better result and work hard to be as fit as we can be for any Surgery. I will be the same when I start the process for Lung Reduction with Valves while waiting for Transplant....Shall I or Shan't I ??? I will know more in April..Stay Strong Hun. I know , easier said than done, Will be thinking of you. XXXX

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What a disappointment 2G. I agree with Ski, although I don't know how to use the words as well as he does. I hope all goes well. Love Lilian xxxxxxxxx

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So sorry to hear this news - you have made a courageous decision in not going ahead with the surgery. Have been thinking of you often and hope the radiotherapy starts soon and helps you.

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So sorry to hear your news. Very disappointing. Hope the appointment for the radiotherapy comes soon.

Kx

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Oh bum! I'm so gutted for you. I really thought the odds were going to be in your favour as you've worked so very hard at keeping yourself as fit as possible. ... Still, the radiotherapy could well do the trick! Fingers still crossed for you. :-) Mx

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you are in our prays hope everything goes well for you

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So sorry to hear that 2greys, it isn't what any of us here wanted to hear - I'm not surprised you're feeling gutted. Radiotherapy certainly sounds like the safest option and if it's of any comfort to you to know - for my daughter in laws friends husband it was a life saver. He had an inoperable brain tumour and after several bouts of chemo had failed to reduce it radiotherapy was his last hope - that was about nine years. I sincerely hope that it works as well for you.xx

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This might be for the best Greys, once you let them in there you don't know what they'd get up to or what germs they'd let in. Best rely on latest technology to see the bugger off. Don't let them keep you waiting too long before they get on with it. I think once you get over the disappointment you'll realise you've now opted for the best option.

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Thanks everyone. It was not really that hard a decision to make.

For surgery to take place they deliberately collapse the whole lung this doubles the strain and pressure on the heart, not good when you have a poorly heart already and as the surgeon said "You need some lung redundancy", which I do not have. I have one third of my lungs left working between the two lungs, collapse one lung and it would mean only 15% working. After the surgery you have to re-inflate the lung using coughing techniques, you also need to be able to cough the fluid build-up out as well which he though I might not be able to do with a low fev1. On top of that as Don alluded to, there is the real risk of infection. The reality is that it was not a hard choice to make, the odds were not very good at all.

The hospital have a new machine that produces a focused beam of radiation that rotates around the body zapping the tumor all round. The beam not being focused on other parts of the body, so it is out of focus on the surrounding tissue and does not burn it. A little like focusing the sun's rays with a magnifying glass to a sharp spot, to create fire. Again onward and upwards the game is not over yet.

Tonight, Sharon and I are going to our little pub for a meal and try to turn our minds off from today's events, for a little while at least.

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Enjoy the meal with Sharon and remember that real ale and good pub food are prerequisites for radiotherapy as indicated by the Camra good ale guide.xx

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Hi 2greys. I don't really know what to say. I do know that anything done under General with compromised lungs is risky at the best of times, let alone with your other issues. It is not my place to say if you've made the right decision or not. I sincerely,genuinely hope the Radio- works out for you. I'd like to echo Ski's comments that it seems to be quite a positive treatment. Please take good care of yourself- Nick. 🤞🤞👍

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Yes 2Greys The SBRT , Which is that happened to me it only it the tumor ,shrunk it almost completely ,No Side Effects that alone is Marvelous , and like l told you l had nothing else done and that was 2 /1/2 years ago , so just try and remember this okay ,and lm 65 not a young girl so it,s such a let down when they say your inoperable , you can pm anytime , sending you so much Love & Light , Always Jennicare xo

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2greys, you made the correct choice, now carry on. Best Wishes, judg69

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I think so too, it's called "Risk Assessment"

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After reading your last post, I’m sure you have made the right choice and wish you all the best in your future treatment. I’m due to visit the hospital tomorrow to find out whether I’m able to have any radiotherapy at all (according to one doctor it’s debatable!!) which leaves me feeling really scared, but we have to hope for some good news....

Best wishes, Lmax

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So sad to hear that the operation is out of he picture, but from reading what Ski says about the Radiotherapy its very encouraging. I do hope it all goes well for you.

Enjoy your meal out with Helen. Xxx

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I’m sorry that you’ve had such a disappointment and knock back, 2greys but it sounds as though you’re getting your head round it all and you’re right - the game’s not over yet. It’s far from over! I’m sure you’ll be reading up about this new radiotherapy, which I think has good results for lung cancers. This evening’s meal out with Sharon is a good first step on a different path. Deep breath (!) and onwards. Take care. xxx

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Hi 2greys, like others have said I think you've probably made the right decision. Some risks are just too great. Enjoy your meal out and I wish you all the very best with your treatment xx

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I'm sorry to hear you can't have the op but I myself would have preferred the alternative after you saying what it entailed.

I truly hope this treatment works for you 2greys. xx

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I did NOT mean to put anyone off from ever having the operation, remember, we are all different. It is just multiple bad cards have been stacked against me. It is easy to forget, ( I do all the time, because I lead a normalish life ) that I am a very ill person, medically speaking, just like more than a few here. The operation itself is a tried, trusted and tested method with a very high success rate for healthy people. The more underlying health problems one has, the higher the risk. The same increased risks apply to any operation.

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I, like others on here, think you’ve chosen the best course, from what you’ve told us, backed by sound medical advice. The very best of luck, believe in it and yes, the story is very far from over yet. Keep us posted, 2greys.

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2 g's is off down the pub into his 7th pint of wadsworth xxxx and you should be shouting for your footie team,,manchester somebody?young lady...Skis and a chelsea cat xx

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Ha! I’ve got 5 live shouting at me as I write! Don’t have a swanky tv here....yet. Fingers crossed 🤞 they play as well as Saturday. I’ll be at OT to see for myself on Saturday. ⚽️👯‍♀️ There’s a tale told in our family of how I, as an innocent young mum, bought my football mad son his first football kit, aged 6. I went to the market and came back with a Chelsea kit. He was horror struck! I said I didn’t like those harsh red and black kits....this lovely blue one goes so well with your eyes!! So I was a Chelsea supporter once 🤣😂 Hope you’ve got a blue kit for Scuffs!! xx

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scruffs doesn't do sports,she's a super model and spends most of her time on the cat walk, :)

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Hope you're not responsible for her frivolous take on life!! 💙🙀😸😽😻💙

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Still on my second m8, we are here for the nose bag primarily, the beer is a bonus.

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Is m8 marstons or urban slang?sorry i kidnapped your post to tell a mad footie fan to support her team :)

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Just say it out loud "mate".

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have they got a shortcut on the keyboard for wadworth 6x?.

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😉 I'm working on that one.

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2greys where are you matey , l live in Canada , l,m Shouting out SBRT to everyone that cannot have Surgery , yes sure Different now ,not like the day he said l was told Inoperable , l too was Gutted , But l feel So Lucky now , if you go to the British Cancer Society Page and Look up SBRT It,s almost like Surgery it Zaps the tumor Away , So Get On It Kiddo ,best of Luck Always Jennicare xoxo

Oh the 2 and Half Years Since l Had The Treatment !!! So Really Been Ned for Over 3 Years , That Can Be You Too Have a Bevy And Get Er Done

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I live in Southampton, UK. Yes, I have done my research. Start SBRT on the 23rd (ten days time) hopefully I can relax again and carry on dealing with my emphysema. I actually found another link to SBRT here for those interested:

cancerresearchuk.org/about-...

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YIPEE 2greys this is going to kill that cancer in your lung , wow l,m so Happy for you ,here in Canada It,s very Difficult to get SBRT ,unless you get in a trial ,which l fortunately did , so l,ve got 10 tattoo,s small and l also did 10 days last one Feb 18 2016 and still Ned , Keep in Touch With Me , l,m Really So Pleased Your Getting This , You Will Be Happy God Speed and Cheers to Beers Always Jennicare xoxo

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It is sad news to read you cannot realistically undergo the operation. The alternative treatments are not ideal but you have always come across as a true fighter and you will fight ,even though you are disappointed at your news. I think skischool reply is spot on. Radiation has moved into a new realm nowadays. Its an awful lot to take in,so take time to decide.

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just to say m8 in total agreement with all who have commented.

hope you and Sharon enjoy your meal.

and we are all with you 2 greysxhelen.

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I'm very sorry to hear that news. One half is grateful that the doctors take such care, and the other half curses them that they won't do what appears to be the obvious answer. However, I'm glad they are being cautious as we don't want to lose you and your interesting research. Many blessings, and if you don't object, my prayers are with you xx

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I'm sorry you didn't get the result you wanted but I think you have made an informed choice from good information and that is what most sensible people would hope to be given by a good medical team. A friend of mine was cleared of breast cancer two years ago by having radiation treatment as she was unable to have an operation to remove the tumour. She is doing fine as I hope you will do. Regards Ann

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2greys, I do know several people who have had radiotherapy and it was a great success. And, all three of them are doing very well, and I will add its years later, now. Not one of them have had a recurrence. My hope is that I can make that number four.....

You are in my thoughts.

Meg xx

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Very best wishes that the treatment you are given will get rid of the tumour without you getting any side effects..

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So sorry to hear that 2greys - what a horrible disappointment. Thinking of you x

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Divannie. I remember your kind words and had no idea things were so serious, can only hope the radiology starts as soon as possible prayers coming from Aus.

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So sorry to hear your awful news, 2greys. Hoping and praying that radiology works for you.

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All the best to you 2G and hope the radiotherapy does a good job! Enjoy your meal. xx Moy

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My heart goes out to you,I can imagine how disappointed you must be , life is so unfair, don't give up there's always a way .

God bless 🙏 you.

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So sorry 2 greys, fingers crossed for the radiotherapy.

Dan

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I know that you will be familiar with the Stoic thinking of Marcus Aurelius, so I shall leave you with this:

"You have power over your mind - not outside events. Realise this and you will find strength."

Stick in there 2greys.

Terry

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Oh! 2greys so sorry to read your news, on the plus side, you have got yourself fit to face it and your positive attitude is wonderful, I am sure this is the right choice. Good luck with your treatment, please keep us updated. Irene x

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You can fight this 2 greys, thinking of you x x x

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Disappointing for you, but the results from radiotherapy will hopefully give you the same result. Good to see you're staying positive. All best wishes and good luck xx

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I understand your disappointment 2greys but stay positive. Radiotherapy can do a lot for you. Thinking of you, Sheila x

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So sorry to hear your news, but you are lucky to have alternative treatments offered. Radiotherapy has over the years given patients fantastic results. Please stay positive you have alot going for you.

Jo.

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Hi 2greys. I don't know the background to your post but I just wanted to let you know I was diagnosed with lung cancer in August 2015 - not offered an op due to other health issues. I had radical radiotherapy (daily for 6 weeks) plus 6 sessions of chemo and I am in remission.

I am on ambulatory oxygen, etc now but that's because of the COPD. So good luck, stay positive and stay strong!

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Thank you for your insight.

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Hi 2greys.

So - we move on.

What does radiotherapy offer you?

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It offers a non invasive (other than a biopsy) cure I hope.

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........... and the word 'CURE' is what you now focus on. Good luck with the radiotherapy sessions and keep us updated on your progress.

xx

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2 Greys , l Believe you Will Be Very Pleasantly surprised At What These Machines Can Actually Do . believe me when l say l was So So Skepitical But Their Like Cyber Knifing Without The Invasion of Surgery , l can honestly say now 2 years later that l am way Happy l could'nt have Surgery , So You Go Babes and l feel very Positive You Will also Get The Same Results as l .. Again Much Love Support & Light Jennicare xoxo

r

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Thank you, My first post-therapy CT scan (after 3months) is in a weeks time and will get the results of that 10 days afterwards. I feel very positive because the horrible dry cough that had developed along with the cancer has gone and I have also stopped coughing up blood, so good signs already.

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Every good wish 2greys. 🙂 xx

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It is only you who can decide if the risks are worth it or not will add you to my prayer list God Bless XC

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Can only imagine how awful that information must have felt. Commiserations on that and I hope all goes really well with the Radiotherapy.

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How awful and sure wish there was another option. Are the poor odds because of COPD or the nature of the operation or type of tumor or some other reason?

I sure hope the radiotherapy helps.

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Sorry for the late reply, I am busy at work (back home now) and replying on my phone is hard work. The poor odds are to do with :

a) the arteries in my heart being narrowed. b) hypertension. c) a new diagnosis of irregular heart beat. The intentional collapsing of my lung would cause even higher stress and higher blood pressure, resulting in heart failure.

d) My peripheral cardiovascular disease (claudication of the legs) could produce a blood clot, leading to a pulmonary embolism or a stroke.

e) My poor lung function would not have enough redundancy (reserves) because the collapsing of my lung would halve the function, also post surgery the remainder of my lung would require re-inflation brought about with a coughing procedure and the surgeon thinks I would have trouble with that, as well as clearing the fluid build up that might easily become an infection causing more damage and reducing my lung function even more.

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Believe me I know how hard it is replying on a phone so only use it when absolutely necessary.

Well you have sure been dealt more than your fair share, and thanks for the detailed reply.

I had a relative who had a tumor around I believe the carotid artery in his neck and he started passing out as it was restricting blood flow to his brain and surgery was not an option because of its location so they did radiation and it successfully shrunk the tumor so I sure hope you have similar success.

Best of luck.

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On balance I would say RT definitely the best option - I wouldn't have chanced the odds offered on the op. You've made the right choice in my opinion, now it just remains to get it started. Am so glad you treated yourselves to a night out, hope it went very well and I feel sure your positive attitude will stand you in good stead for the upcoming procedures. My very best to you.

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SO sorry to hear about your news I wish I could say something positive to you..if it was me I think I would take the Radiotherapy treatment and see how it goes..but there is only so much that you can take I guess..I will be thinking about you .. take care..

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Sorry to hear that 2greys - you must be very disappointed. I hope the radiotherapy works well You are very courageous

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I'm gutted for you too, 2greys, I was hopeful that you'd get the op over with & bob's your uncle. It's going to be a longer road now but you can still have the same result, if by a more roundabout route. From your reply to jackdup above, with all those complications there would clearly be a significant risk of losing some of your present fitness & independence, were you to have the op.

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I’m at a loss for words without sounding patronizing. You’ve made the right decision - your courage & strength of character will see you through this. You’ve many people cheering & praying for a positive outcome. My heartfelt wishes for recovery are with you. Take care ‘til we hear from you again soon.

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Hiya 2Greys , l Myself Found myself In The Same Situation As You , The Thoracic Surgeon Said l Was Inoperable , If He operated Me l Would Die , Omg It Was Horrid To Hear This As l wanted It Out As Per Cure , Well 2 /1/2 years doing fabulous Ned Still , But They Gave Mr SBRT Radiation , By Lord It Works , l understand How Upset You Feel But Just Look At Me Loads Of Other Health Conditions And Feeling Fabulous !! So 2 Grey Sending You Loads Of Love And Hope You Can Do It Too . Always Jennicare xoxo

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Hi jennicare, thank you for telling me your story, I am already at peace with my decision to go the radiotherapy route and you have now added to my confidence. It was a real shock to be told those odds, luckily I had done my research before hand and knew there were other options, so saying "thanks, but no thanks" was not too hard a decision to make.

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You Will Find Out How Wonderful It Feels To Be Clean All These Years With This New Type Of Cyberknifing , It,s So Fabulous No Burning B, No Pain ,No Resides Like Other Radiations . The Worst Part For Me Was My Lovely New Tattoos They Scared Me Too Funny Now , But 2 greys Find Out If They Do SBRT at your Hospital No Down Time Honest , l Will Be Thinking about You Everyday Knowing what Happened with Myself , It Will work For You Too Blessing And Cheers Always Jennicare xoxo

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It will be performed with a LINAC machine.

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Yes that is the same type , they use here in Canada , After l Finished the First Ct Showed a Little Shrinkage Which l was Told Is normal on 6 month Ct it Had Shrunk Signif to 6 mm Where it Has Stayed To This Day , l Am So Thankful For This Trial Otherwise l would not have got that Special radiation , so Now 6 ct scans later still the same , l Wish You So Much Health And Love Jennicare xo Keep us Posted My

New Friend xo

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