Scared of radiation - do you have experience?

[RJN]

I could really do with some insights from those of you who have gone through radiotherapy. I have just been randomised into the treatment group of a trial which looks at adding radiation to my existing treatment. I am doing really well on Keytruda with no side effects and have already had a significant reduction in my tumours after only two sessions. The trial would add ablative stereotactic radiation to my adrenal gland metastasis and convention radiation to lung tumour and lymph nodes. It is a phase 3 trial and has been running for a few years already. But I am really scared of the side effects, and am really conflicted as to whether the risk is worth it, given how well I am already doing. Please could you share your experiences and thoughts?

[LouT]

RJN,

There are folks here who have had radiation and they would be able to answer your questions better than I could.  Hang in there.  You'll be hearing from them soon.  There is also a whole section on radiation and that can be found here.

Lou

[Tom Galli]

RJN,

I likely glow a little in the dark from all my medical radiation. But, I’m also alive, surviving nearly 18 years and in fact having been pronounced “cured” of lung cancer; my opinion of radiation is high. 

I’ve had both types you speak of but in series not concurrently. My conventional or fractional radiation to my lung tumor was my first line treatment. It was administered over the course of 6 weeks (M-F). I had no side effects for the first 3 weeks—it was a walk in the park! But starting in week 4, fatigue and radiation burns to my skin and irritation at the base of my throat with attendant coughing appeared. I got some prescription salve and “magic mouthwash” but neither had much of an effect. Fatigue grew worse every day of treatment. The last week, I could hardly walk from the car to the clinic. But this treatment worked resulting in a NED scan and allowing surgery. We undertook this first line treatment with the intent on shrinking the size of my tumor to allow resection of my right lung. There were surgical complications (that’s another story) that precluded post surgical chemo and I had a 3 tumor recurrence in my remaining left lung. Additionally, there were no lasting side effects from my fractional radiation.

This is where the SABR (Stereotactic Ablative Radiotherapy), then called precision radiation, or SBRT, or the name of my SBRT machine—CyberKnife—enters the picture. I’ve had 5 recurrences after NED (No evidence of disease) producing treatments,  but CyberKnife proved the tumor knockout punch. Most important, this treatment had no side effects; it was just 3 consecutive, 15 minute zaps, and done! Moreover, my oncologist believes the high power, short duration, intensely focused treatment caused an immune response that guarded against new mets. This response—once called the abscopal effect—now has a new name, a “vaccine effect”, and radiation oncologists are embracing this method as the next best thing in lung cancer therapy. I’m struggling to write this on my phone and can’t link a previous post, but use the Forum search function to lookup PULSAR. 

I’ve known many who’ve had multi focal (multiple tumors) treatment by precision radiation of various types. One Forum member—Roz—is a near miracle success story. Look up her posts and a blog about her treatment in the blog section of this Forum.

Yes I’m a radiation fan. It likely saved my life. When a tumor is fried by SABR, it stays dead; it no longer casts off metastatic cancer cells; it just shrivels-up into harmless scar tissue, and it likely creates an immunotherapy effect that guards against future metastasis. It might make Keytruda doubly effective! (That might be the trial objective.)

All my medical radiation treatment side effects were minimal compared to the absolute mayhem of Taxol and Carboplatin chemotherapy. I had 18 infusions of this stuff, and I still suffer side effects from chemo. But I’m alive!

I hope this eases your concerns. More questions? Ask away. 

Stay the course. 

Tom

[Judy M2]

I've had the exact same chemoradiation regimen as Tom. About 2 weeks into radiation, I developed fatigue and esophagitis (the latter due to the location of lymph nodes that lay right on top of my esophagus). My esophagitis lasted about 5 months. If you're in a clinical trial, they should be able to control any pain that you might get if you develop esophagitis. The fatigue is temporary. 

I used Biafene ointment after each radiation session and never had any problems with skin burns. I only had a small area on my upper back that looked like a sunburn but was painless. 

I did develop pneumonitis from radiation that did not require treatment. It lasted for about a year. Now I have some scarring that remains in my lungs from the radiation--but the tumor and lymph nodes are dead! I think the scarring does cause occasional shortness of breath but it's manageable with an albuterol inhaler when needed. 

I believe that all of my treatments have contributed to my NED status. I'm now on a targeted therapy for my particular mutation, and I live a pretty normal life. 

Like Tom, I believe radiation is useful, and I hope we've made you more comfortable with the idea. 

[Karen_L]

I had 30+ radiation treatments, for tumor and bad lymph nodes. I was prepared for esophagitis due to where the radiation field was, but never developed more than what felt like reflux. I didn't have any skin issues. My biggest issue was the incredible fatigue. Luckily, my family could take over and I had stopped work. 

The good news: As of a September scan, the radiation appears to have blown the cancer out of the water. My next scan is in two weeks, and I'll hear more then. 

Good luck!

Karen

[RJN]

Thank you for your detailed responses. Real-life experiences like yours are so very valuable. And of course it is so wonderful to hear your success stories - this is what keeps me positive and upbeat!
 

Being a giant geek, I spent all last weekend reading up on radiation to be able to discuss the potential treatment with my doctors. They were adamant that this could be an extremely important part of my treatment. The leader of the study said that they had put it together because they believe that some stage 4 cancer patients with a few metastasis might actually have a shot at being cured with a combination of radiotherapy and systemic treatment. Obviously “cured” is a word I never expected to hear. I am being treated at the UK’s most advanced cancer hospital, and these guys are extremely experienced oncologists and researchers, so I 100% trust their judgement. In addition to this, they also took me through potential side effects, which they believed would be limited due to the location of my lesions, my age and general health. So I am going for it! It may mean a few months of discomfort, but seems it could well be worth it. I’ll have 4 weeks - 20 sessions - of VMAT IMRT to the main tumour and lymph nodes, followed by a short stint of SABR to the adrenal gland starting in January. So wish me luck!!

[LouT]

RJN,

A chance for a cure is always something to shoot for.  We'll be keeping all fingers and toes crossed and are sending out positive vibes for you.  Please keep us updated.

Lou

[Deb W]

Hi RJN,

I had 15 IMRT (similar to SBRT) radiation treatments for 3 mediastinal tumors - so it was 5 days then off on the weekends.  My oncologist said that they usually don't do radiation in this area, but since the tumors were in a straight vertical line in the lymph stations and they were tiny that there was less of a risk to other organs. I was lucky to be able to have the radiation.   I believe this is also why they used IMRT instead of SBRT.  I've read countless articles on IMRT - but that's what we cancer patients do, right?  I developed esophagitis in the 3rd week which they said if it happens it would happen after 6 weeks or so.  It cleared up within a couple of weeks and I was given Norco for pain.  It was hard to swallow, but I did get through it.  The other thing that happened was a light skin burn and fatigue.  It was well worth it as my CT scan result of November showed a remission!  

I wish you all the best!

Deb

[Tom Galli]

RJN et al.,

 As a point of information, in our community, we have a lot of terms that describe treatment results. Here is a resource from a physician that explains what cure, remission and others means.

Stay the course.

Tom

[RJN]

Thank you, Tom. Yes, I am aware that the term “cure” is inaccurate. I was just happy that the doctors used the word as it shows me they believe that this could have really long-term effects and possibly help prevent future progression. At stage 4, I know that the horse has bolted and cancer can hide in little nooks and crannies for years and decades. But I’ll happily take ongoing monitoring over ongoing treatment if I can get to that point!