Proton vs Tomo

Elisec

We are fortunate enough to live somewhat close to facilities that offer both types of radiation. Any thoughts on which is better?

rsp

Our experience

My husband finished his Tomo treatments on December 23rd. We are also close to a proton facility as well as Tomo.  My husband was all for the proton therapy until... we visited the oncologist who worked at the hospital with the Tomo, and what he told us immediately changed my husband's mind.  

The oncologist said the Proton therapy is SO precise, that if there are ANY cancer cells floating just beyone where the beam stops... the proton therapy would miss it... UGH!  My husband heard that and his mind was made up!  He did the chemo and radiation treatments at Johns Hopkins in Baltimore.  It was a rough ride, but he made it through.  PET scan is at the end of this month.  Praying for a great report.

Best of luck to you!

Hope this helped a little. 

Elisec

rsp said:

Our experience

My husband finished his Tomo treatments on December 23rd. We are also close to a proton facility as well as Tomo.  My husband was all for the proton therapy until... we visited the oncologist who worked at the hospital with the Tomo, and what he told us immediately changed my husband's mind.  

The oncologist said the Proton therapy is SO precise, that if there are ANY cancer cells floating just beyone where the beam stops... the proton therapy would miss it... UGH!  My husband heard that and his mind was made up!  He did the chemo and radiation treatments at Johns Hopkins in Baltimore.  It was a rough ride, but he made it through.  PET scan is at the end of this month.  Praying for a great report.

Best of luck to you!

Hope this helped a little. 

Your experience

Thank you for your reply. How are your husbands side effects? Do you think they are somewaht less than if he had traditional rads? Did he need a peg?

rsp

Side effects

My husband went through 5 chemo treatments and 37 Tomo radiation treatments, and his side effects were ROUGH.  He was extremely nauseated and exhausted. He did not have a peg, and he lost 83 pounds!  Along with the loss of weight went all of his muscle.  In hind sight, I would have insisted on him getting a peg.  Hopkins did not require him to get one, and they said most patients can get through just fine with the management of their pain.  My husband, unfortunately, wasn't among the "easy" recoverers.

Even though he is almost 5 months out, he still struggles to get food down.  *He is an exception with the length of time it is taking him to recover.  The dr. told him he never saw anyone who took so long with recovery.  

With all of this being said, I still believe we made the correct decision to go with the Tomo (although during the really rough times we did question our choice).  We did not want to worry (with the Proton theapy) that there may have been some cancer cells "lingering" just beyond the beam that were missed.  

My husband's oncologist and the hospital we went to are among the best, and that also swayed our decision to go with the Tomo.

I have read several posts on here where the person went with the proton therapy and were very happy with the results.  So, in the end, you have to do your research, ask a lot of questions, look at everything you found out, and make the best decision for YOU. 

There is SO MUCH wonderful information on this site.  It has helped me, as the caregiver, tremendously.  My husband won't get on here, but I have learned a lot, and feel like I have made many friends along the way.

Please let us know what you decide and how your journey goes.

 

Elisec

rsp said:

Side effects

My husband went through 5 chemo treatments and 37 Tomo radiation treatments, and his side effects were ROUGH.  He was extremely nauseated and exhausted. He did not have a peg, and he lost 83 pounds!  Along with the loss of weight went all of his muscle.  In hind sight, I would have insisted on him getting a peg.  Hopkins did not require him to get one, and they said most patients can get through just fine with the management of their pain.  My husband, unfortunately, wasn't among the "easy" recoverers.

Even though he is almost 5 months out, he still struggles to get food down.  *He is an exception with the length of time it is taking him to recover.  The dr. told him he never saw anyone who took so long with recovery.  

With all of this being said, I still believe we made the correct decision to go with the Tomo (although during the really rough times we did question our choice).  We did not want to worry (with the Proton theapy) that there may have been some cancer cells "lingering" just beyond the beam that were missed.  

My husband's oncologist and the hospital we went to are among the best, and that also swayed our decision to go with the Tomo.

I have read several posts on here where the person went with the proton therapy and were very happy with the results.  So, in the end, you have to do your research, ask a lot of questions, look at everything you found out, and make the best decision for YOU. 

There is SO MUCH wonderful information on this site.  It has helped me, as the caregiver, tremendously.  My husband won't get on here, but I have learned a lot, and feel like I have made many friends along the way.

Please let us know what you decide and how your journey goes.

 

Thank you. We have s meeting

Thank you. We have s meeting with Proton on a few weeks after my husband recovers from surgery... I'll keep you posted.

AnotherSurvivor

rsp said:

Side effects

My husband went through 5 chemo treatments and 37 Tomo radiation treatments, and his side effects were ROUGH.  He was extremely nauseated and exhausted. He did not have a peg, and he lost 83 pounds!  Along with the loss of weight went all of his muscle.  In hind sight, I would have insisted on him getting a peg.  Hopkins did not require him to get one, and they said most patients can get through just fine with the management of their pain.  My husband, unfortunately, wasn't among the "easy" recoverers.

Even though he is almost 5 months out, he still struggles to get food down.  *He is an exception with the length of time it is taking him to recover.  The dr. told him he never saw anyone who took so long with recovery.  

With all of this being said, I still believe we made the correct decision to go with the Tomo (although during the really rough times we did question our choice).  We did not want to worry (with the Proton theapy) that there may have been some cancer cells "lingering" just beyond the beam that were missed.  

My husband's oncologist and the hospital we went to are among the best, and that also swayed our decision to go with the Tomo.

I have read several posts on here where the person went with the proton therapy and were very happy with the results.  So, in the end, you have to do your research, ask a lot of questions, look at everything you found out, and make the best decision for YOU. 

There is SO MUCH wonderful information on this site.  It has helped me, as the caregiver, tremendously.  My husband won't get on here, but I have learned a lot, and feel like I have made many friends along the way.

Please let us know what you decide and how your journey goes.

 

More than a little irony in

More than a little irony in your post.  I am at just a bit less than five months, having what I am told is a good recovery, and I still struggle with getting food down, and find daily that there are still things in the process of recovery.  My Thrush is finally dissolving on my tongue, and as it goes it leaves bare spots where the tissue is still red and recovering from radiation.  Yesterday I had a visit from a mild amount of muscusites, and I thought I was done with that months ago.  It was small, it passed, but still...  I had two days of feeling cruddy, lost five pounds, and took two weeks to gain it back.  This is Good?

Hang in kiddo.  This is a year long struggle.

rsp

You are correct

I don't know why I used the word "easy recovery" in my post...  I  don't believe for ONE MINUTE that anyone who has been down this road has an "easy" recovery... very poor choice of words on my part!

 

 

Chicklette

rsp said:

You are correct

I don't know why I used the word "easy recovery" in my post...  I  don't believe for ONE MINUTE that anyone who has been down this road has an "easy" recovery... very poor choice of words on my part!

 

 

True

Nobody has it "easy", but some have it worse than others.