PET Scan Results are now back and showing two cancers, worst possible news i wanted to hear Monday 18th March, i had wrote a article 2 weeks ago on this topic. I have COPD and on Oxygen for activity In 2016 September 12th I had a left lung lobectomy bottom half removed , because of two cancers on bottom of lung, operation was successful, recovered from that, i also have fibrosis and emphysema ,
The suggested course of treatment is Radiotherapy, problem is it is the treatment which will scar a proportion of my lung and make my breathing worse with having to use Oxygen continuous, where at present i use it for activity. so yes can get rid of he cancer ,but will be left with even more breathing problems,
so i have decided to have CT scans every 3 months and see if the cancers get considerably worse , than make a decision on treatment of Radiotherapy, it is about quality of life at present , this has hit me very hard , how do we cope with this type of news ? have any one had this treatment on there lungs , just wondering the damage radiotherapy it has caused to others, would be interesting to hear. wish i could be more positive
thank you
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Guy59
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Sorry you’ve had such horrible news Guy. Give yourself a little while to take in such news, speak to anyone who can guide you sbd hopefully you will get more replies very soon.
Hi Guy,very sorry to hear about your recent pet scan results,2greys has quite recently undergone radiotherapy to drastically reduce and hopefully eventually remove a cancerous lung tumour with great success to date,obviously i can't speak for him but he was very positive about both the procedure and the after effects and i am sure he will come along and advise and support you in equal measure.
Hi Guy, tough news and I am going to give you tough advice: please do not delay, at all, instead start lung radiation now. I do not say that lightly as I am a 7 year stage III A/B lung cancer survivor myself. I underwent lifetime maximum radiation to the lungs, full surgical removal of top right lung lobe, and 2 years of heavy chemotherapy. I also have severe COPD and am now on oxygen 24/7, and am now successfully ( I hope ) being treated for prostate cancer with lifetime maximum radiation to the prostate, and with hormone therapy. And................all things considered, I feel pretty good! ; shop locally , go to Dr appointments , go to movies and select grandkids’ activities, and go out to eat. My advice to you stands: you have a long life ahead of you, please go forward with a positive, forward-looking attitude. Never give in and Never give up, With All Best Wishes, judg69
Hi Guy, I had SABR radiotherapy last year for my tumour in the top left lobe, treatment comprised of 60Gy in 5 fractions over two weeks. I can tell you for a fact that I had no scarring at all from the treatment, I suffered no fatigue and actually went to work during treatment period, the only side effect I could detect was a taste of cardboard for a couple of days and some inflammation. 9 months later the latest CT Scan is showing a continued shrinking and my Oncologist said "With caution, I think we may have cured you".
You really must get treatment underway ASAP, no delay, this is extremely important, if the tumour grows and metastasizes by entering a lymph node or blood then it will spread to your other organs and then your prognosis will not be good at all. The latest research on SABR treatment on survivability is actually slightly better than for surgery.
My breathing did take a tumble but that is entirely down to the damage that the tumour originally caused, not the treatment.
Also a heads up on CT Scans. 2 CT Scans have the equivalent radiation exposure to the same level that European Nuclear workers are allowed to receive in one year. You have already had a (whole body?) PET scan which is already 75% of that allowance. Remember that radiotherapy will expose you to more radiation too and you will need more CT Scans after that, as well as lower dose X-rays, it all mounts up. Radiation itself can also cause cancer, so more waiting with more CT Scans, coupled with the risk of the cancer growing and metastasizing, you will be playing Russian roulette. Please take me seriously, go for the treatment.
Hi ,thanks for reply , i do not understand any thing about the SABR although i now managed a quick read, i do have two active same level in lung , can this SABR treat the 2 together ? just need to say that the decision i came too about having a CT scan every 12 weeks and waiting , the oncologist agreed and said i had made the best decision, i got put off about the scarring damage the treatment will cause me and permanently put me on oxygen , i do hear where you are coming from and taking time to reply ,very much appreciated indeed, only been 48 hours so mind is up and down still
I can see no problem in both tumours being treated by SABR at the same time. The linear accelerator can and does rotate 360 degrees and targets the tumour/s extremely precisely so that the good tissue receives very little radiation. Only the tumour gets the high dose where two X-ray beams intersect.
This is not like in years gone past where large areas of the body were irradiated. SABR is a new treatment developed just a few years ago. The "bunker" (building) and Linac machine where I was treated had only been opened 3 months prior.
If you click on "Lung Cancer" under "Topics" over on the right hand side of this page and look for my screen name "2greys" you will find that I documented my journey and also various external links with all the relevant info on SABR.
Hi getting late now , but will reply , thank you for reply, I am just wandering why I have not been offered this SABR treatment , as looking at the treatment offered , a half of my half lung remaining which has Emphysema and fibrosis, the Doctor has said half of this approx will get damaged by radiotherapy and cause me to go on oxygen 24 hour , at present I use it for activity, be interesting what he say , as I thought for someone like myself , I need less damage to my lung, thank you again ,
It may be that you have one of the rarer types of cancer or at the later stages, or as simple as your hospital does not yet have Linac/Cyberknife machines installed yet, in which case you might need to travel to another hospital.
Hi just checked and my local hospital does have the mentioned machine, was told stage 1 and largest mention was 12 mm and looks slow growing , that's what i know , thank you 2greys
Going to off to work now. I will try to find time this evening to find my posts and those external links for you. My cancer was the common Non Small Cell Lung Cancer. SABR is an ideal treatment for stage one NSCLC.
hi again, i am aware you are at work , i spoke this morning to my oncologist nurse and put forward what you had told me regarding SABR, i had mentioned there were two tumors too you , problem is one of them is close to my Aorta , she told me it is to dangerous to use the SABR therapy so close to a main organ , so that is now put to bed i am afraid ,it seemed the better option for me as to the damage i already have to my lungs, shame , thank you
Hi again, lunchtime. That now goes a long way to explaining the situation, what an absolute bummer. I have no other suggestion, unless your Oncologist can come up with another plan.
I can say that a short while ago I discovered that I also had another 2 cancerous nodules that have/had apparently resolved by themselves. Whether they had died off or gone into temporary remission is not known for certain, but I take it as a bonus.
I can empathise with how you must feel. I had my heart set on VATs surgery. After a fitness test for the surgery was told that I did not have the breathing redundancy and along with heart problems left me with a big chance of mortality or being wheelchair bound on o2 for 24/7.
I am so sorry that you are in this position. I wish I could do more for you.
So sorry to hear your news. But thank you for telling us. There are many who have/had cancer. And I deliberate chose the past tense. Because it is possible to survive. I won’t use the term “fight” because I think it puts too much pressure on people. Take your time to come to terms with it. I hope you are satisfied with your medical team and havdcdopportjve family and friends,
Do what you feel is best for you it’s awful situation your damned if you do and damned if you don’t seems that the cancers must be slow growing then unlike a lot of lung tumours
I'm afraid I'm unable to give you any advice but just wanted to offer you my support. Such trying,testing times for you but as you've already seen,our members can give you first hand advice and that's worth it's weight in gold,I'm sure.
Oh! Guy, what shocking news for you, no wonder you dont know which way to turn. Give yourself time for this to sink in before making any decisions. My thoughts and prayers are with you x
Hi Guy I’m sorry you’ve had such shocking news I can’t offer any advice but I do hope you manage to get the best help from the Drs treating you I send hugs and prayers to you take care 🌹🌹
Hi Guy - You are probably feeling a little inundated with responses but I just want to add this. I had radical radiotherapy and chemo for lung cancer in Aug 2015 - already with medium level COPD. Went on BiPAPP machine overnight ever since and, due to scarring, went on oxygen 24/7 in December 2017. I am in REMISSION! Yes, the oxygen therapy controls my life - but it is a good life, restaurants, parties, entertaining friends and family and the odd weekend away. So, please, go for it - you will work around any scarring issues ....
Just been reading this thread again, it all sounds very technical with lots to take in. Glad to see you have the sensible and steady words of 2greys and others to help you. Take care.
So sorry to hear about the cancer, I think you're doing the right thing with the 3 monthly scans, a friend of mine had the treatment and it made him much much worse as it destroyed some good part of his lung too, this didn't give him any more time, it gave him less. So keep having the scans, keep healthy, look into herbal remedies too, and keep positive, take up a hobby to take your mind off it and exercise too, keep away from treatment for as long as you can.
Dear Guy59, I am so sorry to hear your results. I, personally, think you are going about this problem the right way with the scans to show if the tumours are growing. Best wishes for a better outcome. Lilianne.
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