The oncologist wants to do a CT and PET scan on the same day this month. My husband is now stage IV NSCLC and had both these tests done in February. They have not started any treatment yet for him . He only saw the oncologist two weeks ago. He also ended up with congested heart failure late last year. They don't understand how it happened. The Thoracic surgeon did not relay any of this info to the oncologist. Now they are trying to figure out his heart issue and he will have an appt with the cardiologist this week. In the meantime they (Cross Cancer) has doubled his heart medication as they want to be able to do chemotherapy and immunotherapy. I asked if they could just do immunotherapy as the chemo would be too hard on his heart and organs. Apparently, for monetary reasons they have to do at least one chemo treatment in order to offer the immunotherapy. They don't have enough evidence that the immunotherpy will work alone. This does not sit well with us. Hopefully, the cardiologist will have some answers for us in a couple of days. Does he need to have both scans done...CT and PET?
The oncologist wants to do a PET and ... - The Roy Castle Lu...
The oncologist wants to do a PET and CT scan the same day. Is it necessary to do both?
Dear Keepingstrong
Welcome to the forum and so sorry to hear that your husband has lung cancer. I see that you live in Canada, so the health care system and guidelines may differ from here in the UK.
It may be they want to do a heart CT scan and PET scan of his lungs, you would be best to discuss this directly with them to understand their investigation process.
Some combination therapies, i.e. chemotherapy and immunotherapy are only licensed for use together, so it may be this is why they have to start 1 chemotherapy dose in order to continue with the immunotherapy under their pharmaceutical regulations, but do ask the oncology team the reason for this.
This is the link to Lung Cancer Canada: lungcancercanada.ca/
and
Canadian lung cancer survivors charity: survivornet.ca/cancer-type/...
Hopefully they will be able to advise you the medical guidelines within Canada.
It sounds like they are being thorough with their further tests to provide the treatment that will give the best outcome for your husband. This is understandably an emotionally exhausting time for you both and the ongoing anxiety.
If you would like to discuss anything you can email ask the nurse at lungcancerhelp@roycastle.org.
Kindest regards
The Roy Castle Support Team
0800 358 7200 Monday to Thursday 0900-1700
Friday 0900-1600
Thank you so much! I appreciate your reply and information.
I just went through this with my Oncologist! I too had my CT & PET scan the same day in February. It was brutal. Not only do you have to refrain from food for 4-6 hours before the PET, but you need to eat mostly protein and no exercise the day before. Because I do CT scans of neck to thighs I need to drink the 2 glasses of contrast as well as having it run through my veins. Then the radioactive stuff in the PET just did me in. I had diarrhea for at least 3 days.
Saw on my schedule that I was to have the same thing again this week. I called and cancelled the PET and moved it up a few weeks. I am already on treatment and my CT showed improvement and stability so my Oncologist said I do not need the PET scan next month!
As for getting the chemo/immunotherapy, for 1st line (beginners) that is usually the rule. For many of us, the first chemo had very little or no side effects. More side effects from having to take steroids the day before and day after! I had double chemo for 6 sessions and then many single chemo maintenance before immunotherapy was approved here in the US in 2015.
As the Helpline suggested, ask the Oncologist why he is scheduled for these 2 tests again? Sometimes it is a scheduling error and other times they have their reasons! Call and see if a nurse can find out for you both. Hope this helps and good luck!
Thanks Seaspray for replying. We will be finding out if he can do one or the other or on separate days. I'm happy to hear you are doing better.
They did 4 rounds of chemo in 2019 and immunotherapy wasn't approved till after my husband did his treatments. It was the 3rd and 4th treatment that he ended up with adverse side effects from the chemo. The thoracic surgeon only did chest xrays for followups, which didn't show it metastasized to the bones.
It was in February of this year we requested a CT and found out it metastasized to the bones.
Sorry to hear they waited so long to do a CT and that you had to request it. When I was diagnosed in 2014 I had bone mets to my vertebrae and 2 ribs. A few years later while on Opdivo I had a large met in the hip/pelvic region. The vertebrae and ribs disappeared after a few years of treatments. The hip I had radiated and never heard another word of it. Recently I had one pop up in my spine, the L5. I got that zapped in March. Hang in there, all of this is livable! I try to lift weights and walk to keep my bones strong. So far it has worked as my large dog has pulled me down the street 3 times and nothing broke but my pride!!!
Wow, so happy to hear you are doing so well with it. They want to do chemo and Keytruda. They haven't discussed any radiation. He has a tumor on his fifth rib, sacrum, pelvis and some nodes in his chest and neck. We've been doing natural supplements, vitamins, mushrooms/fungus like chaga tea and turkey tail powder, fermented greens and protein smoothies. No sugar, no processed foods and lots of enzymes to clean up his blood and repair cells. I'm trying to get weight on him as he lost 25 pounds last November but it has been difficult. Plus he is very picky. He is also anemic. He has been getting B12 shots and taking an iron supplement which seems to be helping.
Good news the other day, his left ventricle was only at a 20% EF it is now at 40%. They were actually surprised. We had to request they do an echocardiogram as one had not been done since February. We always have to be on top of these things and advocate for ourselves.
Hi Seaspray, I have a question in regards to RT. They ended up doing the CT and a bone scan...no PET. The scan showed no change in his bone mets accept for the one on his rib. Which is great news. I asked them to see if they could do RT on the rib to slow it down or get rid of it. They set up an appt for a consult next week. My question is how was the side effects for you from the radiation treatments you've had? We are also looking into hyperthermic therapy as well, with a Naturopathic doctor. Not sure if you've heard of it?
The side effects are a little different from bone to bone. If his rib is bothering him now, it will probably bother him a bit more from the inflammation caused with radiation. This can last for about a month. The only other side effect I had was fatigue. Each day I would lay down for a short nap. Other than that, radiation is a breeze!!!
Thanks for letting me know. He will likely have to have it done as we wait to see what or when they will do other treatment.
Hi Seaspray, We had our appt. with the radiologist and declined treatment. She said they can do radiation on the rib or sacrum but it would be for pain only and not to treat or reduce the cancer. She said it could spread if they try. Did you have RT for pain only? How did it affect the cancer?
Most radiation for stage iv patients is for palliative care....not to cure but to give pain relief and more time. What systemic treatment is he going to be on? When I was first diagnosed I went on Carboplatin and Alimta. I believe my rib mets disappeared soon after that treatment. It is weird, the ribs and vertebrae was always mentioned in my CT scans and then one day they were not. Now 8 years later they have never come back! There is hope:)))
He was diagnosed in 2019, had a partial left lobectomy and did 4 treatments of cisplatin. This time they want to do carboplatin and Keytruda but won't start treatment till his heart is functioning at 50%. They won't just start him on immunotherapy because they aren't ''allowed'' without at least one treatment of chemo. Monetary reasons. In the meantime, we just wait. He may start Fenbendazole to see if that kills or slows the cancer down. We are also looking into hyperthermic therapy. He has another CT in 7 weeks.So happy for you and to hear your results. Very promising! His PD-L1 is only at 1%.
Hopefully time will fly by! Is your husband being seen by a Cardiologist? Carboplatin will be much easier on him then that Cisplatin hopefully. Let me know how the hyperthermic therapy goes. Just recently I have heard of this but do not know much. Hope he can start the chemo soon and tolerate it well.
Yeah he's seeing a cardiologist. They tried to put him on Entresto but it did not agree with him. He got so congested and developed a horrible cough. He went off of it but is still coughing. We heard the Carboplatin will be better. We see the Naturopath Dr. on Wednesday and will find out more info on the hyperthermic therapy. Will let you know what we find out. 😊
Hi Seaspray,We saw the naturopath and discussed the hyperthermic treatment. We may do some, when/if he starts chemo. We were told he would likely need at least 10 treatments of the hyperthermic therapy to see results. About 4,000 CA. In the meantime he is going to try mistletoe therapy three times a week. We'll see how it goes. He has another CT scan in August.
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