Pet Scan results finally back - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

4,969 members2,994 posts

Pet Scan results finally back

Guy59 profile image

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

9 Replies

Hi, back in June 2017 I was diagnosed nsclc and did a love Tony right dude middle upper right then 30 days of radiation also 6 treatments of chemo the sept 2018 brain surgeries to remove a 3 can tumor with 5 days of radiation now I went to my pet scan Feb 28 th 2019 all organs clear of cancer but.... 21/2 cm node where my middle line was in my lymph node lit up, saw my Dr today and he says suspicious of cancer and will go to tumor board, says no surgery and no radiation it’s dangerous but chemo 4 treatments 3 weeks apart then I have to do a immutherapy infusion every 3 weeks for the rest of my life, no oxygen and I’m healthy as can be and I have a mutation kras so immotherapy will be good and I’m so scared, now here’s the weird part, they are assuming it’s cancer cause it lit up but the day of my pet scan I was on antibiotics to treat upper respiratory infection so I had fever and cough a lot so my other dr said that lit up node could of been enlarged due to the infection.... what do u think????

JanetteR57 profile image
JanetteR57 in reply to Lovey1000

sorry to hear all your various issues - PET doesn't light up with infection so although the symptoms may be similar, it works by picking up certain chemicals/markers between the fluid (glucose based) and whatever is found. If you have KRAS mutation, as you say targeted therapies are shown to work well and immunotherapy is changing the landscape. Lung cancers can be very different and react differently to treatment so it's more personalised now. Lymph nodes can be enlarged due to infection so you could always ask whether a further scan or blood tests will be done once you've recovered from your infection to ensure the symptoms are not just related to that and do relate to whatever has been found on your latest PET/CT. I'm assuming the doctor you saw is either a respiratory physician/chest specialist or an oncologist - if so, they should be expert in their area. I'd always ask your own clinicians about your own specific case and potential treatments as many of us on this site will have completely different scenarios despite them all being labelled lung cancer. I wouldn't profess to know everything and the more I learn at lung cancer conferences around Europe, the more I appreciate how variable lung cancers are. Incidentally I had half my upper left lobe removed in Dec 2010 and recovered well - returning to full and even increased activity over what I could do before (swimming 300+ lengths non stop after surgery compared to 130 lengths beforehand), work full time and travel. As you are aware, most of us don't use all our lungs to breathe anyway and the remaining parts can be developed if we keep active to take over the work of the part removed. Good luck.

Lovey1000 profile image
Lovey1000 in reply to JanetteR57

Thank you so much, every joint in my body hurts hips elbows etc but the will biopsy node and said chemo for life

JanetteR57 profile image
JanetteR57 in reply to Lovey1000

sorry that you're in such pain. Are you taking pain relief? hope you get some relief soon.

RoyCastleHelpline profile image
RoyCastleHelplinePartner in reply to Lovey1000

Dear Lovely1000

Sorry to hear of all your recent developments, JanetteR57 has provided an excellent response. Do speak to someone if you are still in pain which may need to be assessed, either your GP, lung cancer nurse or specialist.

If you wish to discuss anything you can call our Freephone number on 0800 358 7200

Hope you feel better soon from your respiratory infection, if it has not cleared up by now, go back to your GP.

All the very best

The Roy Castle Support Team

Hi Guy, sorry to here you have more trouble. In October 2015 I had tumor in top of right lung I also have copd. They wanted to take top lobe of lung. I decided I couldn't do it as had broken arm ongoing op on that and broken foot. I insisted on another way. I was lucky and 16 patient treated with targeted static radiotherapy. This causes much less damage. I then had ct every three months. In November was told only go once a year. Hope this helps. X

So sorry to hear your news. I can understand the position your in. I think youve made right decision x

Thank you kindly for your reply, much appreciated

Dear Guy59

So sorry to hear of your news and the impact it may have on your quality of life you have at the moment.

It is a very individual decision and would encourage anyone to ensure they have all the facts and information to hand so they are at peace with what they decide to do.

Quality of life is so important as you say and it sounds like you are managing very well using your oxygen for activity at the moment.

If you are interested I have placed a link from our website on radiotherapy for lung cancer:

If you wish to discuss anything you can call our Freephone nurse led helpline number on 0800 358 7200

All the very best

The Roy Castle Support Team

You may also like...