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Stereotactic Radiation . Help ?

Clearblue
Posts: 187
Joined: Apr 2010

Hello there all you brave and wonderful people,

Im new here.
It looks like my wife will be having stereotactic radiation for scc.
Anyone know anything about this kind of RT.

Were meeting the oncologist in a few days time.
What questions should we ask:
1
2
3

tnx
Clear

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

I had this type of radiation for my NSCLC in '09 but really can't think of too many questions to ask the doctors. It's a very easy procedure and the side effects, mostly fatigue, are no different than from any type of radiation.

The only question I can think to ask is how many sessions she will need, I only had four.

Wishing you and your wife the best,
Glenna

Clearblue
Posts: 187
Joined: Apr 2010

Glenna

I remember you from the H&N, though charactgeristically, i never really posted directly to you.Its been a while since ive been on the site. I have read your posts. I am so sorry you have been through so much.

I just havent had the energy to go into the lung discussion posts. After all the reading and researching on H&N, trying to get my small brain around all that info, and now ive got here.
Looks like were heading for stereotactic Rads.

For some reason i have received so little response/info on this type of Rad, and found very little reference to it on the csn site. i wonder why?

Id like to hear more about the type of Pulm. Physio ure doing.

Take care clear.

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

Yes, we are both on the H&N board also and I remember reading your posts as well. I'm not sure why there isn't much discussion about this type of radiation or why it's not used more often.

My oncologist recommended this for the lung tumor after they treated the larynx cancer. I believe he chose this because the tumor was relatively small and was very close to the pulmonary artery. Since this is a much more targeted radiation there would be less damage to any tissue close to the tumor. I know the machinery is still relatively new, we have only had it in NH for about 5 years.

My situation is different because I have severe emphysema and a large tumor in my right lung, along with the lymph nodes in the center of my lungs and a spot in my left lung that are lighting up the PET scan. The doctors are afraid I will be left with permanent shortage of breath if they operate so they sent me to physical therapy. I started walking and doing other types of exercises to try to strengthen my body and improve my breathing. The physical therapist put me on oxygen 24/7 because my oxygen levels are too low if I am doing anything other than sitting still. It's not real bad yet, I'm only on level 2 for the oxygen. I've only had 2 meetings with the PT and she said there is no sense continuing to see her now because I am already doing more than what she would have asked me to do, she said I will need the PT after the surgery not before.

Please don't stress over the stereotactic rads, each visit took approximately an hour but most of this time was getting everything lined up exactly so the radiation would be targeting only the bad cells. The longest visit will be the first one because they will explain everything to her and they make a mold to the shape of her body for her to lie in while receiving the treatment. It really is a very easy process and completely painless. This is nothing like the radiation treatments you receive for H&N cancer, I had some fatigue but it's hard to tell if that was from the Stereotactic or not because I had just finished chemo and radiation for the larynx the month before starting this treatment.

Please relax, she will do well with this type of treatment!!

If you have any other questions please don't hesitate to ask, I will help in anyway I can.

Stay strong,
Glenna

Clearblue
Posts: 187
Joined: Apr 2010

Glenna, im reposting with small changes my post from the H&N.so u know the whole picture.

We were just into our 3 month post hypopharingial rads. Wifeys neck burns healed really well. Though food tasted like garbage, the mouth sores seemed to be clearing and were almost gone as an issue, believe it or not.

But then, swallowing became difficult , post rad stricture possibly. She was out walking every day,; we were 3 weeks to a PET and could finally and possibly deal with with a small lung mass that showed up on her previous pet. (It was decided to Radiate neck first and then lung.)

We investigated the possibility of dilation and we did a video-flouroscopy barium swallow test to check the severity of the stricture as well as to see whether we could in fact have a dilation so close to post rads. The first swallow went down with some coughing and then she was instructed to take a cup size gulp.

She expressed her reservation at doing this saying that she "usually drinks with a straw", having undergone 2 partial laryn(pharingial)gectomies. cos swallowing is difficult, and aspiration common. But she "succumbed" and then had a MASSIVE aspiration which left her gasping and coughing. One day later, pains in her chest, and shortness of breath. x-ray showed barium filled lungs. This was followed by lung infection and hospitalization for 11 days, antibiotics etc. I cannot tell you how unbelievably irate she was . Then she was released home with oxygen and a week later back to hospital and worsened infection for another 5 days . 20 days later she had a bronchioscope under anaethetic which proved very difficult , resulting in a plummeting drop in saturation and she went into intensive care unit fighting to save her lung form total collapse!

This has been so unbeleiveable because the squamus on the lung has been "waiting to be radiated" for 5.5 months!.

After 4.5 kg weight loss,she managed to breath her way out of IC and is now back at home and trying to exercise daily. She was o2 dependant until 3 weeks ago , though saturation is not where it should be.

Neck PET showed nothing new except for the known lung squamus, and also an unexplained "spot" in the pharynx which the Onco said he'd known about previousely( though we didnt, anyway) but cannot be biopsied cos cant risk another aenaesthetic.

SHe did a lung check, and her lung function is low and there is still slight infection.
In addition she has developed a kind of asthmatic breathing issue, which she feels is completely disturbing her ability to a'walk out" the lung infection and blocked bronchii form the aspiration dammage. She is now on steroids/chortisone treatment (tablets and inhaler).

Im worried as i havent heard of any one who is Fanconi Anaemia who has had lung radiation.
Second, im unsure as to the success of this type of RAD, and im too chicken to ask for now! Tomorrow we meet the RT guy... .

Also, I understand form our Lung Doc, that mini pneumo.of the "neighbor" lung is often an effect of this Rad, and that's not something we want; breathing is difficult enough without it.

Glenna, what kind of breathing exercises are u doing?

(Im gonna ask my wife to desrcibe to me the kind of exercises shes doing; i know shes using a tri-flow upside down and then blows out through a straw in a glass of water. This helps her bring up phlegm; but id better ask her for a proper description)

(BTW, have you heard of, and what's yr take on Dr Burzynski, Housten Texas)

Take care - you are a champion!!!!!
Clear

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

Yes, I remember most of your posts from H&N but I rarely posted a reply because my situation is so different from you wifes and I am not FA so I didn't want to give any advice that could harm your wife. Sweet is the only other FA cancer survivor I know.

As I said, I received this type of radiation in 2009 and compared to the radiation treatments I received for my larynx it was a walk in the park. No mask and only 4 visits, 5 counting the simulation. I felt quite comfortable going with this because my tumor was extremely close to the pulmonary vein and the radiation is targeted and does not damage the surrounding healthy tissue. I was never told about the possibility of "mini pneumonia" in the other lung and as far as I know there have been no adverse effects from receiving this treatment.

Right now I am still waiting to have surgery rescheduled for a VATS wedge resection of the right lung and bronchoscopy for the lymph nodes. Have been to physical therapy twice and my therapist said last week that she was going to contact my pulmonologist so hopefully we can get things rescheduled so they can decide the treatment plan. You know as well as the rest of us how hard the waiting can be. I want to be fighting this thing right now!!

My lung function test results were poor which is why the surgery was postponed and I was sent to a physical therapist who put me on oxygen 24/7. I also have severe emphysema which is causing problems with having the surgery. The therapist has me walking for at least an hour each day, I can do it all at once or in 20 minute intervals during the day. If the weather is nice I prefer to walk the hills where I live because it gets me out in the sun and fresh air. If it is rainy or too humid I use a treadmill. I am also doing lung exercises that someone here on the lung forum found on youtube; http://www.youtube.com/user/lungexercise
I spoke with my therapist about these exercises and she said they wouldn't hurt me but she didn't like the idea that they weren't more diaphragm breathing which is the correct way to breath. I still do these exercises once a day and use my spirometer. She showed me an exercise to strengthen the diagphragm...lie on your back with knees bent and place a light book on your diaphragm and breath in and out for at least 15 minutes a day, it's like your diaphragm is lifting weights when you inhale. I am also using 1 pound weights to help build up the muscles in the upper chest and arms.

I would really be interested in learning more about the exercise your wife does with the straw and glass of water because I also have a problem with phlegm and can't seem to cough it up.

I hadn't heard about Dr Burzynski until you mentioned his name. I will have to look into this to see what he has to offer.

I hope I have been of some help to you and your wife. I'm not a champion...we are ALL champions!!
Glenna

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Burzynski. The man is a fraud and a charlatan who has lured many desperate people to his "clinic" to receive "treatments" that they either never got or that didn't work and had no hope of working. If you're reading wikipedia please keep in mind that ANYONE can change their info! I have a horror story on my hard drive involving a lot of money (at least 30,000 and nothing done at all!) at that clinic.

So, sorry to rant, but be wary of claims about cures - anyone who really could cure cancer would be the richest man on earth right now :)

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

Thanks Deb, I googled it after Clearblue asked me my opinion of him just to see who he was. When I saw "alternative" I automatically got a little suspicious. I know some alternative treatments work in conjuction with traditional treatment but I'm still leary of their claims. Thanks for confirming what I already suspected :)

Hondo's picture
Hondo
Posts: 6643
Joined: Apr 2009

Guess we are all over here; I too started having some Lung problems and I am hoping to get some answers here. I am scheduled for my PET next month just want to be prepared with a little knowledge about lung C.

Hondo

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