Recent diagnosis - What was your radiation experience?

Hello, I was just diagnosed with stage 1, non-small cell. I'm debating between the open surgery (the nodule is not in an easy location) or targeting radiation. I'm scared of recovery from the surgery, but I'm also scared of potential long-term side effects from radiation. I'd appreciate hearing your experiences of either, but especially about targeting radiation, since I feel surgery is more common. Thank you so much.

[kpark51]

I think it all depends on your overall health. I had stage 1 back in 2017 and had VATS surgery. Went very well. Didn't even need pain pills. The chest tube was the worst, as mine laid on a nerve, but it didn't bother me all the time and when it came out, (4 days), it felt wonderful. I'm assuming you mean SBRT for radiation, and it's very safe. They target just the tumor, saving healthy lung tissue. It's a personal choice, but also one I would discuss with my doctor. I wish you all the best and keep us posted. If you can't have VATS and they are sure they can reach the tumor by SBRT, that's what I would do, but, as I said, ultimately, the choice is yours. MANY people have done SBRT and are cancer free.

[Denzie Moderator Volunteer in reply to kpark51]

The radiation I had was for stage 4, but, some of the experience translates. My radiation oncologist used the traditional external beam as stereotactic body radiation (SBRT-cyberknife, etc) was not approved at that time. It was necessary to give me 33 treatments on each of two masses. I mention this because of the incredible advancement that SBRT has been in lung cancer treatment.

With the newer targeted radiation types they are able to accomplish more in a few days than what took a month and a half previously. As for side effects, the fatigue was one of the worst parts for me and for many I speak with.

My largest mass was next to my esophagus so I experienced some painful esophagitis I used an Rx called Magic Mouthwash Since then I've learned that eating a tablespoon of honey after each treatment. Some people never experience any. I do recommend using a moisturizer on the area of skin that was radiated. I used Aquaphor, others I know liked Cera Ve and Ulra.

Long term, exercise helped overcome the fatigue. There is also some fibrosis As I age and don't know how much is normal and how much is long term side effects That said, I've made multiple trips to Europe, and both coasts I found that slowing my pace a bit and drinking lots of water when traveling at higher altitudes

What ever choice you make, I send hope for a durable outcome and long, long term survival

[dunnellon]

I had CyberKnife radiation treatment for my stage 1 lung cancer after biopsy results showed adenocarcinoma of a 2.2 cm nodule. The biopsy included the placement of a tiny (rice size) gold fiducial marker. I then had another CT and was fitted with a vest I would be wearing during the targeted treatment. I had 4 treatments, about an hour each, each a few days apart. That was Nov/Dec 2020. I had no side effects. It was painless, no radiation burn, no nausea and no fatigue.

Since then I have been monitored having 5 CT/w/contrast and 2 PET scans and so far the radiology oncologist is happy with what she sees. If she's happy, so am I.😉 I'm scheduled for another CT in April (fingers crossed!) and will have another PET in October. If I'm clean after 5 years, she said she would release me from the every 6 months schedule.

Every surgeon wants to 'surge' and will tell you surgery is 'the gold standard'. If you're interested in radiation treatment, take your disc copies of your scans along with the reports and make an appt. to talk to a radiology oncologist and find out if you're a candidate for their treatment. Do your homework, make your decision, don't look back, keep a positive attitude and remember there is a higher power.

Best of luck to you and keep in touch with the forum! You will find a wealth of information and support.

[JanetteR57]

we often imagine we know all about surgery but so much has changed in recent years with lung surgery and lung cancer treatments. I had open surgery in Dec 2010 to remove the upper left lobe and what turned out to be a 7cm tumour (adenocarcinoma) .

Not having had any surgery since a tonsillectomy before I started school, I had no comparisons and usually don't like to take medication. I reacted badly to the morphine pump I was given so put onto oral diclofenac tablets instead and was home after a week, told to keep active and given an incentivising spirometer and some physiotherapy exercises to move my shoulders/arms.

We may imagine the surgery via the chest but it's through the side/shoulder and as others have said, there are drain tubes. For me their removal after surgery were more painful than the surgery site. The painkillers I'd been given caused constipation which was painful but lactulose remedied that. I was back at work, active and swimming again within 3 months. My cancer was stage 2b and then there was no keyhole/minimally invasive surgery nor SBRT (SABR) radiotherapy. I became involved in lung cancer research in 2013 but before that part of Roy Castle lung cancer foundation patient literature panel in 2011 and attended a conference in 2012. I'd had no idea how few patients are actually detected when surgery is possible - certainly in the UK - so was even more grateful that I'd had that opportunity. When I joined NCRI and NIHR research community and met more cancer patients/survivors who all had tales of their side and late effects from chemotherapy and radiotherapy I was more grateful I'd recovered fully from surgery and was able to get on with life.

However I also saw SABR/SBRT offered to those less able to tolerate surgery (elderly/frail) with good results and minimally invasive surgery then VATS (but often RATS i.e. robotic) meant shorter hospital stays, less infection risk and offered those who may not have tolerated an open operation. In the UK minimally invasive surgery is now dominant in lung surgery. The majority are still detected when too advanced for surgery to be possible which is why we're introducing lung screening/early detection for those at high risk. However as a never smoker, I'd never qualify for screening. SBRT is also used widely for metastases in spine, lung and brain so has been effective.

Both treatments can be given with curative intent so I'd weigh up the options as you are doing. I'm often intrigued by patients who could have had surgery yet declined as to their reasons as the same reticence is not seen with heart surgery, appendix issues, gall bladder or other organs when often presented with emergency situations. Most of us do not use all our lungs and many have damaged lung parts so removing part of it isn't an automatic weakening of our breathing capacity. The surgeon told me that my recovery was up to me and if I kept active, my remaining lungs would redevelop and although not filling the space completely would reinflate like a balloon. I found his comments very empowering and went onto swim much much further than the 130 lengths I used to do several times a week and used swimming to improve my lung recovery post surgery and raise funds for Roy Castle foundation - my furthest was 360 lengths which took 5.25 hours non stop.... and I swam over 980 miles in a year in 2012 and 2013. I say this to show what is possible and not having swum between the October when I showed up in A&E and the end of March (apart from the night before surgery and morning of surgery) I had to start really slow but swam on my back sculling my arms at the side for 20 lengths to start with so it can be done. Walking was my other form of keeping active - just around the house, then the street, then the park and building it up slowly. good luck whatever you decide.

[Kaylee20]

I could not have surgery when my stage 4 NSCLC was found in 2019 because it was in both lungs. I started with chemo and immunotherapy for 2 years. Then as those new little buggers showed up I started having SBRT radiation. In 2021 I got some mets to my brain. I had LITT surgery to brain (piece of cake) and other mets to brain since I have had SBRT also. I had no side effects from radiation at all. If anything I might have been a little lazy on day 3 after radiation which means I would just lay on couch and watch tv these days. Never had burns, vomiting or nausa. I really didn't notice any changes. I would have treatment for my lungs every other day for 2 weeks (total 5 treatments). Was in and out within 20 minutes. There was one part of radiation I just thought of that I didn't like. On me they put like a girdle around my stomach very tight. It was so that I could not take full breaths of air. You can still breath of course but very small breaths. I did not like this feeling on not being able to take full breaths. Don't know if they do this to all patients when they do lung radiation but to me they always do. Karen in Minnesota

[Karuna2]

Hi, I just want to add a note about long term cyberknife. I had my first cyberknife treatment about 15 years ago. At the time I had 4 treatments of 1hr 20 min. 9 years later, there was another tumor and I had it again. This time it was 4 treatments of 25-30 minutes. Most recently, another tumor appeared ( I have the lepidic lung cancer which keeps on giving) and I was told that cyberknife would not be a good option because of 'toxicity'. I didn't want the surgery because that is best for non-recurring cancers. I ended up having an ablation. I had counted on being able to continue with cyberknife and was really shocked to realize that is not possible. Luckily, ablation worked. I can do that again if a tumor occurs so long as it is not near the esophagus or heart. It is a hard decision and your wise to ask those of us who have been going thru it. The docs are great, but there's nothing like personal experience.