PET Scans are a must !!!!!

[bart ziggie ( Greg )]

Good morning everyone. I have something really eating at me and would like some feedback on. I posted early last week in the SCLC forum cocerning my now presumed recurrance. With everything again happening so fast i am trying to gather all the info i can in regards to recurrance and second line meds,treatment options etc. Heres the big thing on my mind. I fired my oncologist Oct. 1 when i finished my last PCI treatment. I had several issues with him starting about 3/4 the way thru my treatments. I had been symptomatic throughout my treatments and him and i did not agree on alot of things. He was the most insensitive SOB i had ever met. The only regret i have is i should have got rid of him sooner. OK heres why im posting. From early on in my treatment i was experiencing active cancer symptoms that i could not contribute to chemo or radiation. Thru the course of treatment the Dr. did send me on 3 occasions for chest x rays, 1 bone scan, 1 mri of my brain, and 1 CT of my chest early June. From the very start i had ask about a PET scan. He said insurance does not pay for PET scans for SCLC patients. I didnt investigate unfortunately! At the end of my chemo in Aug. i again ask about a PET scan he said a CT scan of my chest would be indicative enough to tell if i was NED. CT scan in Aug. came back CLEAN they said there was no evidence of cancer. I started PCI. I also ask my radiation oncologist about a PET scan and he was all for them for SCLC patients but again he also told me insurance companies would not pay for them with people with limited stage SCLC. Well after my treatments and firing my old oncologist i found a new Dr. My first visit with him in early Oct. was great i really liked him and he gave me the most thourough physical exam i have had in my life. He also took the time to sit down with me and go over all of my concerns. I relayed to him my concerns about how i had been feeling and some symptoms i was having. My initial visit that day i was however not feeling too awful bad. At any rate, he was concerned and wanted to see me again in 30 days. I wasnt even scheduled to see the other Dr. till Dec. 9. Well after my first visit with the new Dr. things got bad quick ! I started having pain in my chest and my ribs on the right side were hurting bad. I called his office and they wanted to see me ASAP ! I seen him Oct. 17 and he ordered a CT of the chest. My info at the bottom of the page indicates what they found. He ordered a PET scan on that mon. The PET scan as my info indicates was " lit up " like a christmas tree. So now i am in for the fight of my life for sure. My point is this. Either i was misdiagnosed from the very begining and was actually exstensive to start with or i developed mets during treatment, or i was not FREE OF THE CANCER after my treatments.Or last but not least, i was free of the cancer and had a recurrance right at 2 months after my chemo ended. Any ideas from anyone ? Anything here sound familiar to anyone who has had a recurrance ? Had i been afforded a PET scan to start with in Aug. it would have allowed me to have alot more treatment options including the possibility of more chemo with the same meds. I could have tolerated 8 rounds. For anyone who is battling recurrance issues you know how limited options become, especially when the recurrance is so quick. I am posting this in hopes of getting feedback and maybe getting help from others to push, however we need to push ,regardless of what type of L/C we have for PET scans. Unfortunately right now my world is upside down and as you all know things are moving so fast i have little time to soak up what knowledge i can and start making descicions. The fact of the matter is PET scans in my mind would increase survival rates no doubt about it. Having to wait untill you are extensive stage to get this done is crazy to say the least. I wish i had more time and energy to devote to this but i just dont have it. If there is anyone who shares my feelings lets try to do something about this i cant do it alone. I feel that my cancer wasnt gone to begin with and a simple PET scan would have led to that conclusion. I appologize if i have rambled here but i dont think i have ever felt this strongly about something in my life. If i am wrong here please feel free to tell me that too. I will be anxious to see what you all think.

Regards

Greg

[awpoint]

Greg

My husband is on Medicare. At the end of treatment we did the Xray and Ct scan. Dr said a pet scan would be good but Medicare wouldn't pay for SCLC pet scan. Then he said wait a minute and went away. Came back and said yes it would. That there was only one code for all lung cancer. I don't know if all insurance companies use the same code system. But you might check.

I am so sorry you did not get yours sooner.

Anne

[shelliemacs]

All I can contribute is that my moms reoccurrence occurred within 2 weeks of finishing first 6 rounds of chemo and we were never given radiation as a treatment the first time around. by the time we could radiate her it was too late and she passed from an uncontrolled white cell count that to this day we dont know if she died from cancer/malnutrition/infrection/heart attack/ not one of her dr's has ever called us either with any information.

[Sam'swifeShirley]

Greg,

I'm really sorry that you are having som much trouble. Stay as strong as you can and know that I'm still praying for you and all of us.

There's lots of medical literature that shows that PET scans are very useful in staging and following NSCLC, going back a few years. The studies with PET in SCLC are not as many and therefore the current "official" thinking is that PET is not indicated for SCLC. However, the studies are all positive and the test is being done every day more and more on SCLC patients, especially by leading LC specialists. It's just a matter of time before PET is "officially reccommended" for SCLC, it just isn't yet. You can count on the insurance companies to use any excuse not to pay for it though.

I think that what Anne said above is right though about there being only one code for LC.

I've been fortunate. My thoracic surgeon who diagnosed my SCLC at bronchoscopy in May, 02 ordered a PET immediately as part of the initial staging and my HMO didn't even balk. I had another one for restaging after treatment with no problems. I've had two more since but they were done outside of the insurance at a non-approved facility.

God bless us

Sam

[rinksgal]

Darrell was never given a pet scan either until after surgery, the thoraic surgeon said everything was fine, 2 oncologist said he was a very luck man and they staged him at 2b... only a b due to the size of the tumor... Lucky my *ss!! 5 weeks after surgery his fever returned and the none of the oncologist thought it was of any concern...The nurse practioner told Darrell well people don't run fever with lung cancer, especially a little biddy fever like that... she said it was probably a virus...He ran a low grade fever around 99. something to a 100. But this is also the only reason they found his cancer to start with... Now they believe that Darrell does run fever with lc.. They say they see 50 people a day and no one with lc has ever ran a fever... They even checked him for lymphoma because its a symptom of that. They thought he might have 2 types of cancer at one time. Thank god he didn't...even though he had no symptoms but chills and fever and sweats... for 8 days... His Family Doctor (Thank God) ordered a pet scan once he found out Darrell hadn't had one and in the medistiaiumn area it showed an uptake.. So his doctor called the oncologist and they ordered another ct scan and it showed 3 tumors in his medistiaium area, in three nodes.. one tumor was already 2.8 x 2.8 cm in size.. Now you tell me this wasn't already there 5 weeks earlier???? Maybe if a pet scan had been done before surgery I believe that this would have showed up... and maybe found before it got to that size... But nothing can be done now...Its there and we are fighting with everything we know to do, but I watch everything they do now...and don't do.. I question them constantly!! I want to know why about everything they do...

Christy

[DJR]

My dad was told the same thing, that he was in remission. He kept having pain in the same areas in the bone and his onc. told him that it was not cancer related. After a month goes by my dad could not stand the pain so the doctor did a scan and the cancer is in the same spots that he was told it was gone. My dad still had two more chemo treatments schedule but he was told that they were not needed. We are now in the process of changing onc. and are going to insist a PET scan. When you are told you are in remission and one month later its back is like a slap in the face. I hope everything goes well for you. God Bless

Donnie

[LindaMRG]

I dont know a thing about sclc since my father has nsclc. But, dont kick yourself about that PET scan. True, who knows what "wouldve been or couldve been" but for my father PET scans have failed him twice. First, a year and a half ago when onc first saw tumor on his lung, PET did not light up. By the time it did, he was IIIa. Then in Oct we were all set for surgery, he goes to surgeon for pre op and surgeon feels supraclavicular node that did not light up on scan. Biopsy confirmed cancer spread.

So, just know you have done your best within your power to do the right thing. Wishing you the very best.

[berisa]

My Dad was dx sclc this apr, he completed all treatments. After all treatments were completed, all oncologists (more than 3) said that my Dad is no need to have CT/PET Scan to evaluate the result of treatment. The reason is, even it shows something still present, they will not do anything (chemo etc.) immediately due to the toxicity etc.

So their logic is, there is no point to do any scan to check out something abnormal while without any possible treatment that could solve at this moment. So scans only bring anxiety to the patient himself/herself. So, they all don't recommend my Dad having the CT/PET scan. One doctor said I should understand and consider my Dad's psychological needs.

Also, my Dad insists not to know as he thinks he can beat this cancer as long as he is so confident to himself. So, he chooses not to have any scan to discourage himself and make himself anxious.

[mhutch1366]

I have never had a PET scan. All my screenings are done with MRI and CT. I had all my surgery, radiation, and followups at NIH, where I am sure they would have sent me for a PET scan if it had been advantageous.

Just my two cents.

MaryAnn

[bart ziggie ( Greg )]

Hello everyone ! I would like to thank everybody for their feedback regarding my post. I was pretty wound up when i posted this and i hope the emotion didnt garble the message i was trying to convey. Sam i am glad to hear there is progress being made to make a push for PET scans in the staging process of SCLC and other stages of treatment. I firmly believe this will hugely impact survival rates of SCLC patients thru various means.Thanks for the input. Christy, your story is a perfect example of what i am talking about in my post. Thank you as well for sharing. Also, i dont know who them oncologist are that said that about the fever but if it were me i would be looking very hard for another doc. Best wishes to Darrel and yourself in our battle. Donnie, sorry to here of your fathers recurrance. You have the right attitude in insisting on a PET scan. This is a human life we are talking about here and we as patients and caregivers etc... have the right to the best available means possible at achieving our desired results which is to live. Keep us posted. Berisa, hopefully i read your reply wrong !!! After your father completed treatments he didnt even have as much as a CT scan ??? I hope i misinterpreted this. I may be mistaken but to me this is unheard of in the treatment of SCLC or any type of lung cancer. A ct is very routine especially when it comes to declaring someone NED. Please berisa if you see this post reply again or re post under a new topic. This baffles me.

[berisa]

Greg, you got my point. My Dad finished 6 rounds chemo at the end of Sept. While he was preparing to have the 6th round of chemo, he had a chest X-ray right before the 6th round. That chest x-ray was his last chest x-ray until now. The oncologist observed that x-ray and commented the tumor shrunk much and the result was very good during that appt right before the 6th round chemo.

After that, they arranged a brain MRI for my Dad and the result was no mets. Then he started the PCI x 10 and completed on 10/15. On 10/15, the oncologist met my Dad right before the last time PCI and the next appt will be Nov 14.

There is 2 different types of hospital in Hong Kong. One type is Private. The other type is Public (governmental). Since my Dad didn't buy hospitality insurance AND he was the public servant (retired for 2 years), so he only went to public hospital without paying any fees (kind of benefits). In public hospital, since majority of Hong Kong people (especially the generation of baby-boomers) do not have insurance, so most of them go to governmental hospital. So the resources are very limited and if we want to have a CT scan or MRI etc.....we have to quene up for a very long long time except this is a real EMERGENCY case. How can a cancer patient wait for that long, TIME is a factor!!!! Moreover, one silly thing is, as you know, Hong Kong is a big city and famous in the world. BUT, there is NO PET Scan machine in any public hospitals (except private hospitals). FORTUNATELY, the hospital that my Dad receives treatments did place an order for one PET/CT combo scan machine. This will be the first machine among all public hospitals. But REALLY don't know when will it be arrived and whether my Dad will be benefited from it.

That is why, so far, my Dad had a CT scan and PET scan done for diagnosis (April this year) in private hospital by paying the expenses by ourselves. During the chemo treatment, we had hesitated whether my Dad had brain mets that we went to private hospital to have the BRAIN MRI. The only CT Scan done for FREE in public hospital was BRAIN CT Scan. Certainly all x-ray are FREE.

This is the scenario that my Dad didn't have any CT Scan, PET Scan and even Chest x-ray after all treatments were completed.

My Dad asked the oncologist on 10/15, what else should he pay attention in the future? The oncologist said, if he feels painful, suddenly losing significant weight of himself and coughing blood.

In fact, I have persuaded my Dad to have those scans in private hospital for evaluating the performance/results of all those treatments, but my Dad refuses to know as He feels great now. I only tell myself, if the situation is not allowed, those oncologists will not let my Dad having the PCI, because PCI only could be done on those patients have excellent response to the chemo. So, I only trust them.

Moreover, over 3 oncologists said, those scans are not necessary due to the above mentioned reasons I typed previously. If what they said is true, I also don't want my Dad to worry too much and bear too much toxic especially even doing chemo will not benefit my Dad NOW, the only thing I can do is trust him, giving the best alternative therapies to him and if those symptoms appear, then we definitely come to oncologist immediately.

Greg, don't give up, I strongly suggest you keep your fighting spirit up. Try other alternative therapies. I will pray for you.