Choosing a place for radiation

[JHP]

I have been trying to get a hold of an oncologist to ask for an opinion for four days already, so while I'm still waiting, any advice is greatly appreciated.

Dad's biopsy on the bone metastases came out and it is not SCLC, but rather NSCLC. Just to recap, there were lesions on the brain, neck, leg, kidney, and pancreas. And a fracture from the bone mets that they said could possibly heal on its own without surgery as long as it was radiated. No one knows if they are all metastasized NSCLC but the bone metastases definitely are. Of course, finding out that NSCLC can transform into SCLC through targeted therapy was frightening. The internal medicine doctor said he would defer specific questions but his opinion was Option 2 is better but it was our choice to go with the sooner or later available places. I was advised that we could not start radiation and switch to another place because mapping would only be paid by the insurance once. We have to choose between starting radiation at one of these two places:

1) local hospital

Pros: can see him right away for radiation this week

Cons: was the hospital that originally transferred him because they didn't have specialists, not ranked in lung cancer in US News and World Reports, not NCI facility, pretty much no doctors are around after 3PM, current doctor described it as "not having as many resources"

What they offer:

Varian TrueBream® linear accelerator (LINAC)

Varian Trilogy®

3D guided stereotactic body radiation therapy (SBRT) or stereotactic radiosurgery (SRS) when targeting tumors in the brain

Image-Guided Radiation Therapy (IGRT) 

Intensity-Modulated Radiation Therapy

RapidArc® Radiation Therapy

2) cancer center

Pros: NCI facility, more resources, current hospital's recommendation

Cons: 3 week wait time minimum before treatment can begin,

What they offer:

intensity-modulated radiation therapy (IMRT). 

stereotactic radiosurgery (SRS)

stereotactic body radiation therapy (SbRT)

high-dose-rate (HDR) and low-dose-rate (LDR) brachytherapy

CyberKnife and GammaKnife radiosurgery

hyperthermia

high-intensity focused ultrasound (HIFU)

hypofractionated IMRT and brachytherapy

3) top ten hospital, should I try to get this place?

Pros: NCI + nationally ranked top 10 cancer hospital, has proton therapy in addition to everything above

Cons: seems reluctant to accept transfers, doctor did not include this in the two options they presented but this place does accept our insurance, possibly very long wait times

I don't know if radiation mapping is just one spot at a time or all of it at once, because for his lung and brain mets, it seems like Cyberknife would be a superior option.

 

 

 

[LouT]

The biopsy confirmation of NSCLC is an improvement of SCLC so that is one positive element of his condition.  Others in our forum will be able to share any experience they have had with the technologies you are asking about so I'll keep my comments brief.

1. An oncologist is a necessary person on your father's medical team.  Please get one and review all the testing, options and places of treatment with them.
2. Whenever possible a hospital with deeper experience in cancer, especially LC is preferred over the alternative.  If you have any doubts at all and it is reasonable (travel time, etc.) then you can choose a facility that may better suit your father's condition and needs.

Others may have deeper experience with the technologies (e.g., Gamma and Cyber Knife) and I'll follow this thread to learn along with you.

Lou

[JHP]

He doesn't have a dedicated oncologist in any sense since he is at the out of state facility right now. Insurance is only covering orthopedic care. The hospital will discharge him back to the home state for oncology care. I suspect this is why they did a biopsy on his bone mets and not a lung biopsy.

Some good news, I was able to get Option 3 by asking, and they have an even sooner appointment, so there is no tradeoff there. The hospital apparently hadn't even checked to see if they were available, they just recommend Option 2 out of habit. Option 3 has everything Option 2 has + proton therapy.

But Option 2 mentions they started rolling out ----- therapy last year which claims to be better than standard radiotherapy, started Phase I trials and they are the only one with that particular machine, BUT the types of cancer they've treated aren't lung in particular so like proton therapy which is location dependent, it's not guaranteed that this technology will be relevant for this situation...

[JHP]

I just wanted to share what I learned.

https://www.rwjbh.org/blog/2019/june/choosing-the-right-radiation-therapy/

https://www.cyberknifemiami.com/cyberknife-vs-proton-vs-hifu/

https://www.summitcancercenters.com/cyberknife-vs-gamma-knife/

https://polymedex.org/en/blog/edge-varian---sovremennoe-lechenie-v-onkologii

https://www.oncologysystems.com/resources/linear-accelerator-guides/varian-high-energy-linear-accelerators-comparison-chart

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7445956/

External beam radiation therapy (EBRT). For this type, a machine sends the rays of energy to the tumor. This treatment is usually done every weekday over several weeks.

Includes:

SRS

SBRT

Conformal radiation therapy

Image-guided radiation therapy (IGRT)

Intensity-modulated radiation therapy (IMRT)

Photodynamic therapy (PDT)

Proton therapy

Total body irradiation (TBI)

Total skin electron beam therapy (TSEBT)

Internal radiation (brachytherapy). This is also called interstitial therapy. Small seeds of radiation are put inside or near the tumor.

 

EBRT

Stereotactic radiosurgery (SRS)

Gammaknife is the oldest, and radiation can only be delivered from limited angles to a head that is screwed into a contraption. It does not offer continous tracking. Minimally invasive.

Stereotactic Body Radiation Therapy (SBRT)/(SRS)

(following bolded are machine brands)

Cyberknife is newer and can reach 360 angles. It does offer continuous tracking.

Truebeam is like Cyberknife, but newer, and offers higher radiation doses in a shorter amount of time.

Varian Edge description "distinguishes EDGE from the cyber-knife system, where only two perpendicular x-rays are used, which increases the risks of inaccurate placement of the patient and can lead to the need for an increase in dose and entails risks of damage to healthy tissues.

The innovative Calypso system is used in the treatment of hard-to-reach tumors of the uterus, lungs, prostate, pancreas, and liver.
Calypso monitors the mobility of the target (tumor) during the irradiation using implanted markers or beacons, to accurately determine the location of the tumor and tracking its movements during the procedure. This allows you to treat tumors of complex localizations, protecting healthy tissues as much as possible.

Varian Edge® is a unique system that allows real-time tracking of a target (tumor) in 6 directions in 2-, 3-, 4D modes and monitoring the patient's respiratory movements using SRS stereotactic surgery or stereotactic extracranial radiation therapy SBRT."

Varian LINAC series from oldest to newest Trilogy 2005 > Truebeam 2010 > Edge 2013

Trilogy and Truebeam can deliver 3D, IMRT, RapidArc, SRS/SBRT

Edge delivers 3D, IMRT, SRS/SBRT

-----------------------------------------------------------------------------------------------------------

Questions:

Varian Edge sounds REALLY like radiodynamic therapy...is it the same thing but branded? But the NCI facility said it was the first time this has been brought to the US. I read that they said it was only ever previously used abroad.

Some of these faster options deliver higher doses but supposedly 30-40% of radiation exits through the target. If laying down for a long time isn't an issue, would the lower dose Cyberknife be better? But some of them offer clearer imaging and more accuracy...

In hindsight...that first local hospital choice sounds like they were saying we have Windows, Word, Powerpoint, and Excel. That list is basically two machines.

 

 

 

[LouT]

JHP,

I wish I could offer more experience on this topic, but I cannot.  Lungevity does cover Radiotherapy under our Treatments section and it can be found here.  It may not provide the detail you are looking for but can provide some additional information.

Lou

[Tom Galli]

JHP,

Precision radiation (CyberKnife, a form of SBRT) saved my life so I am a fan. Precision radiation is a technology dependent treatment. So I'd go to a place with the newest and most technology. Because of technology cost, the best radiation oncologists tend to congregate in hospitals with the best technology on hand.

I can answer your mapping question. Each area to receive precision radiation will require a mapping procedure. Mapping is performed using a special CT scan. In my case, I had an initial scan. Then the radiation oncologist and physicist devised my treatment plan and a second CT scan was administered to confirm the radiation path. So every lesion treated will require a separate mapping.

I also strongly recommend Lou's suggestion of consulting with a medical oncologist as soon as possible. It might be best to choose a radiation oncology hospital, then a radiation oncologist and a medical oncologist at the same hospital. These two disciplines will need to collaborate because your husband will require systemic treatment perhaps during and most certainly after radiotherapy.

Stay the course.

Tom

[JHP]

On 12/21/2022 at 12:07 PM, Tom Galli said:

Precision radiation is a technology dependent treatment. So I'd go to a place with the newest and most technology. Because of technology cost, the best radiation oncologists tend to congregate in hospitals with the best technology on hand.

Thanks Tom. I still do have some lingering fear of missing out about ------ therapy at the NCI facility, but since there are no guarantees that this could be used, after researching, I think the choice of the top NCI hospital is a much more comfortable one. They have all the newest tech.

[Judy M2]

I had 30 chest radiation treatments with the Varian TruBeam, along with chemo. My treatments were in a community setting, not an NCI. 

I don't recall whether your dad has had biomarker testing done. That would be an important piece of the diagnostic process.

[JHP]

@Judy M2He has but the results have not come out yet. I tried asking if this was common or comprehensive, but he doesn't have an actual oncologist assigned to him there. It's someone on the team who can be consulted, but that person has not been reachable for the two weeks he was there.

[JHP]

The gears are rolling after discharge. They were going to keep him longer and make him miss his appointments, but after I communicated with them about the misunderstanding, he was discharged in hours. That was the fastest they've ever responded since admission. I was promised a call with someone on the team about the biomarker test a week ago, it'll just be quicker to ask the next doctor. Everyone means well, but they are not in a hurry. He has medical and radiation oncology appointments scheduled at the top hospital, transport arrangements to his appointments, his medical equipment is now acquired, PT is in the works, and compression massager will arrive next week since he was using them at the hospital.

I just have some lingering doubt about should I try moving things even quicker. The radiation oncologist assigned is extremely experienced in dad's relevant mets issues, has all the titles and research background, teaches, and is one of the dept chairs. In terms of pedigree, he doesn't lose to any of top places elsewhere. Given that he will be designing the radiation plan, I really think this doctor should remain our choice. I'm going to call to see if there is an earlier opening probably every other day for the next week for this doctor...but if the choice comes up, should we just make a choice with a different doctor to see them earlier? They are still a top hospital doctor...so they will be more or less excellent. I guess one con about that doctor that compared to other younger doctors is that he might not be very available to contact...

It's just that dad has been in pain for two months. He is complaining about pain through the night and mom has to stay up to take care of him. She hasn't sleep a full night since this started. The pain is supposed to decrease with just one radiation treatment, and it takes anywhere from 1-7 days after this appointment for them to arrange the radiation start. At most, changing doctors will make this process quicker by a week. Is it worth it?

 

[LouT]

My coaching is to stay with doctors you are comfortable with and confident in.  Regarding your dad's pain.  Please ensure that the lead doctor is aware of the issues and consider adding a "palliative care" professional to your medical team.  They can monitor reactions to treatment side-effects and disease progress in order to counter and/or reduce them wherever possible.  Many here have taken advantage of their services and had many good things to say.

Lou

[Tom Galli]

JPH,

The pain will decrease markedly after precision radiation starts. One caution on changing radiation oncologists, however. A treatment plan must be developed by the treating radiation oncologist and reviewed and approved by a physicist (to check safety) for each area of the body treated. Changing radiation oncologist starts the treatment plan development over. Doctors are reluctant to use treatment plans devised by other doctors and confirming physicists will almost certainly require a new plan on change of a doctor. So, I'd stay with your dad's radiation oncologist.

So I wouldn't advise a change to accelerate treatment for about a week.

Stay the course.

Tom

[JHP]

Thanks @Tom Galli and @LouT for your advice. I feel more sure about this choice now. I did not know about the physicist part, but I did suspect it would not be easy to switch doctors mid-way.

I discussed this with them and their decision is of course we're going to go with the best doctor we can get. At least we can put the what if we got a better doctor question to rest, because the what if this had been treated sooner boat sailed about 2.5 months ago. It's only a few days worth of difference. Hopefully when the compression massager arrives that will ease his pain. He was fine in the hospital without pain meds as long as the massager was running all day, but without the massager he had to take the oxy they prescribed.

[JHP]

We were given a prognosis of an average 2 years due to the various mets. She said there's no reason not to have hope, but this can't be cured. The doctor used the word average, not median. He's not a candidate for immunotherapy due to low PD-L1. The liquid biomarker test results will still take week to be out, so I am praying desperately that targeted therapy will be possible. He's not a candidate for any clinical trials since he can't walk right now, but the vaccine clinical trial I asked about was not open. When I helped them check out, I saw my mom helping my dad put on his coat in the wheelchair from across the room and suddenly I wanted to cry.

[Judy M2]

This is a rough journey for anyone who travels it, that is for sure, and I'm sorry you and your family are going through this difficult time. My lung cancer isn't curable either, and I have no idea how long I'll survive it. But the reality is that tomorrow isn't promised to anyone. I've learned to live one day at a time. 

I don't remember if you've looked into a palliative care specialist who can help manage your dad's pain and quality of life. I couldn't tolerate the usual opioid painkillers like oxycodone and morphine, so my palliative care doctor prescribed methadone, which worked very well when I had a severe case of esophagitis from radiation. A sleep aid and anti-anxiety medication can also be prescribed (both are standard chemo comfort drugs). Palliative care is a great resource and I can't recommend it enough.

I hope your dad's radiation treatments start soon. Waiting is so awful. 

[LouT]

You don't need to go through this alone...even with family we often need others of similar experience and some of that can be found here at Lungevity.  Please take a look at some of our "Online Communities".  There are virtual meetups, coaches, and of course our forums.

Lou

[JHP]

Radiation ended up not being necessary after all. They're only planning on palliative bone mets radiation right now but otherwise it will be targeted therapy. They told us he is EGFR so that is the best news that could be possible in this situation. Which is true, he will get to try the medical advance of this decade.

The radiation oncologist asked me specifically, why aren't you smiling? Of course, I obligingly smiled. If my mask was off, people would think I was the Joker. He also said it's so rare, it's really fortunate to find this mutation. To which I asked is it really rare? Don't almost half of the Asian population with NSCLC have it? [I saw this in one of the lungevity talks where they said this mutation was more common in the Asian population whereas with Nordic? ones it was less than 10%] He turned red, laughed, and said yes. I didn't mean to put him on the spot, that was an automatic reaction. Neither the radiation oncologist nor the medical oncologist mentioned the 5-7% transformation chance or how long on average this medication could work, and I didn't want to ask in front of my dad. He could do with some hope. I have to work on being grateful. A month ago before the biopsy, the doctors at the local hospital originally said it could be SCLC.

I think I know too much; I don't wish to know less though. This past month the words someone said on the news in the aftermath of a great tragedy kept echoing in my head. They said I have to move on no matter what because everything ends in this life (Buddhist meaning). That thought makes you live in the present but tinges every moment with terrible sadness. While reading, I stumbled on another way of thinking that will be more helpful for the present situation.

"I cannot defeat the fear of death. However, death, the cause of that fear is in the future. The future is merely an illusion that doesn't exist yet. If one does not imagine the next moment, then any human can jump off a cliff."

Of course, I did not share these thoughts with dad who earlier said no thanks when I created a powerpoint to go over the material the doctor said. He doesn't want to know too much. I respect that.

Here's to hoping the medication will be effective for decades and decades. They say with all the mRNA advances, a cure could be possible in this decade.

 

[Karen_L]

JHP,

You've been through a whirlwind of information. There is nothing wrong with educating physicians or informing them of our own knowledge. Often it results in superior care or a feeling of empowerment to seek a physician more appropriate to our situation. 

I would urge you to take the prognosis of how much time he has left with a grain of salt. So many of us have heard dire predictions and learned to laugh at them because we've lived long beyond them. 

What are the specific biomarkers of the EGFR result? Different biomarkers respond better to different targeted treatments. Many driver mutations have been identified. Many more haven't-- yet. Here's some useful information to understand the broader landscape: https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/types-of-lung-cancer

 You are doing a superb job. Try to remember that you need to take care of yourself too. Turn off the phone and the computer, listen to music you love, go for a walk in the woods, read-- do something that restores your spirit. This will be a long road for your family. You can't will it to move faster but you can do things to help yourself cope. 

Hang in,

Karen

[JHP]

@Karen_L

Thank you Karen for your advice and encouragement.

I did the majority of intense mourning in the first two weeks of this month. It was two nightmarish weeks from the day hospital 1 told us it could be SCLC before they did a biopsy at hospital 2. At the current top hospital, he got a blood biopsy done the very first day and the biomarker results came out a week later. Lo and behold, the biomarker results from hospital 2's tissue biopsy done three weeks ago came out on the same day. And it seems that tissue biopsies are less accurate anyway. I read before that there are statistically signficant differences in outcomes based on the quality of the hospitals or ERs admitting the patients, but now I really have a first-hand view.

It is L858R and Tagrisso. I just noticed that you're using Tagrisso as well. The doctors seemed to be cheered by the news. There is the implication that if this works it will be longer than the original average prognosis (given assuming he didn't qualify for immunotherapy and could only start chemo). The Tagrisso websites show the improved median results for Stage 1-3 compared chemo, but they don't give any stage 4 data. There's still a lot of reading I need to do.

There are so many unknowns. All I can do is not let what hasn't happened affect the present moment.

Best wishes to you

[BridgetO]

Hi JHP, I have a couple of comments about prognosis and reading.

First, be aware that lung cancer treatment has evolved at lightning speed over the past several years. What this means is that reports of survival and recurrrence rates, which are usually based on 5 years of experience are practically out of date by the time  they're published. So  beware of relying on prognosis statistics that you find on Google (or elsewhere, for that matter). 

Second, statistics are based on large numbers of patients, but everyone is a case of one. 

Third, and  related to the second one, doctors don't know everything. I'm a survivor of 3 different primary cancers. My most recent was a lung cancer, NSCLC, Stage 1a. Before that I had a rare and aggressive gynecologic cancer, Stage 3,  which my doctor wrote in my record as having a "dire prognosis". This was in 2011. Here I am now, with no evidence of disease since the end of my treatment 11 years ago. , 

So, read cautiously and keep up hope.

[Judy M2]

JHP, I'm Stage IIIB EGFR+ (Exon 19 deletion) and on Tagrisso since March 2020 after having chemo and radiation first. Everyone is different, but I know of people who've been taking Tag for 7 years.

I really think it's best to ignore statistics. I never think about possible transformation or what comes next. I know I'm getting the best treatment for my mutation. Live one day at a time and enjoy your time with your dad. 

By the way, tissue biopsies are the gold standard for biomarker testing, not the other way around. Liquid biopsy is dependent on whether tumor DNA is circulating in the bloodstream, and not all tumors do that. 

[JHP]

@Judy M2 Thank you for your sage advice. I've come to that conclusion too. He's getting the best care available to him right now.

You're right that this is not true for all types and stages. I watched this and they mentioned that the blood biopsies could pick up on something that the tissue missed. In stage four nsclc the lack of circulating dna isn't really an issue, and this really has to be considered with things like the risks of repeated tissue biopsy procedure and of course the turnaround time.

[JHP]

CTs show shrinkage by half at the six month mark. Brain CT TBD. The oncologist says that this is all good news, and the plan is to keep on going with the Tagrisso. I was reading things again in the past few nights; it always happens before the appointments. I asked about BLU-945 trials, but the oncologist said only those with progression would qualify. The accompanying intro for this drug in the research journals is anxiety inducing. 

I also asked the oncologist hypothetically, what would happen if some spots persist? The answer was increased dosage only for brain mets, otherwise radiation to the specific spots or something like nucleotides. I tried to find info on nucleotides without much success. Are nucleotides an actual actionable treatment or is it this which still seems to be in clinical trials https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9044757/? Does anyone know what this is exactly or have experience with it? It sounds like a type of immunotherapy...

[Tom Galli]

JHP,

The first 2 answers to your hypothetical question are practice methods in use today. Nucleotide targeting is not yet a treatment modality. I read the PubMed paper and that is the limit of my experience with nucleotides.

But, the most important information on your dad's treatment is the shrinkage of tumors reported in the first 6 months of treatment. This is worthy of celebration. The only reason I can think of for a change in treatment is progression and hopefully, that won't happen.

Stay the course.

Tom

[JHP]

Thanks, @Tom Galli. Yes, it is worthy of celebration. I hope that it will continue working. Maybe I'll bring this up next time, I don't want to take up their time over this. When they mentioned it, I thought it was a treatment, but it sounds like it's a mechanism that can be targeted possibly using more than one method.