Let's talk about radiation

Editgrl

ncg007 said:

Extended Radiation and weight loss...

Chris...I did and unfortunately experienced diarrhea and weight loss, which was your previous question. I had 28 radiation treatments and the more I got, the worse the diarrhea.  I had no other issues, no burning and nausea was not too bad. I attributed the little nausea I had to the 2 rounds of Cisplatin I had along with the radiation.  I followed a low fiber and BRAT diet, but unfortunately that didn't fully help.  Good news is the diarrhea quickly cleared up about a week after radiation.  As you know our bodies all react differently and you may be just fine....Nancy

Nancy

Glad to hear your nausea wasn't too bad.  Most of the women I've been in contact about this were having chemo concurrently. Did you take any priobiotics during radiation?  And, here's to finishing up your chemo soon!

Chris

NoTimeForCancer

Editgrl said:

Nancy

Glad to hear your nausea wasn't too bad.  Most of the women I've been in contact about this were having chemo concurrently. Did you take any priobiotics during radiation?  And, here's to finishing up your chemo soon!

Chris

Ladies, this is a good friend

Ladies, this is a good friend of mine.  She is one of the beautiful women who I have met through this fight.  She called me in March 2015 to say her cancer had metasticized and to keep up the fight.  Since someone started a thread on RADIATION I thought this would be a good place to realize the side effects of this treatment.  I don't do it to scare anyone, but to know what can happen.  

https://www.youtube.com/watch?v=WvTR4Q43Hk0

She was addressing a Radiation Research Society.  

 

EZLiving66

NoTimeForCancer said:

Ladies, this is a good friend

Ladies, this is a good friend of mine.  She is one of the beautiful women who I have met through this fight.  She called me in March 2015 to say her cancer had metasticized and to keep up the fight.  Since someone started a thread on RADIATION I thought this would be a good place to realize the side effects of this treatment.  I don't do it to scare anyone, but to know what can happen.  

https://www.youtube.com/watch?v=WvTR4Q43Hk0

She was addressing a Radiation Research Society.  

 

Wow, that was eye opening!!

Wow, that was eye opening!!  Why are we not being told the possible side effects of our treatment?  The more I get into this, the less I trust the conventional medical community.

Thank you!!!

Love,

Eldri

SandyD

NoTimeForCancer said:

Ladies, this is a good friend

Ladies, this is a good friend of mine.  She is one of the beautiful women who I have met through this fight.  She called me in March 2015 to say her cancer had metasticized and to keep up the fight.  Since someone started a thread on RADIATION I thought this would be a good place to realize the side effects of this treatment.  I don't do it to scare anyone, but to know what can happen.  

https://www.youtube.com/watch?v=WvTR4Q43Hk0

She was addressing a Radiation Research Society.  

 

Wow! Very informative!

Definitely information I'll factor in in my decision making! The more I learn, the more likely it seems that pelvic radiation is not a direction to go in. I also don't see there's much research support for preventing recurrences. At this point I'm still looking into brachytherapy.

NoTimeForCancer

SandyD said:

Wow! Very informative!

Definitely information I'll factor in in my decision making! The more I learn, the more likely it seems that pelvic radiation is not a direction to go in. I also don't see there's much research support for preventing recurrences. At this point I'm still looking into brachytherapy.

What I find so tradgic is no

What I find so tradgic is no one listened to my friend's pain.  Her cancer had come back and they weren't even looking at that.  Of course, all treatment has to be weighed, and that is a very individual decision.  

Editgrl

NoTimeForCancer said:

What I find so tradgic is no

What I find so tradgic is no one listened to my friend's pain.  Her cancer had come back and they weren't even looking at that.  Of course, all treatment has to be weighed, and that is a very individual decision.  

Treating the symptoms and not

Treating the symptoms and not looking for what is causing them is something that is all too prevalent in Western medicine.  Look at the many women who go for months with uterine cancer symptoms before their doctors even begin to consider cancer.  

There are two things that are frightening here:  the possiblity of these serious side effects, and the lack of acknowledgement of the disease and possible treatments available.  To me, the second is the scarier of the two. Why did that woman have to suffer for 6 long years before she was treated?  That's a crime.

NoTime, your friend mentions that her cancer had recurred, but did she ever receive treatment for her PRD?

I do have to say this is freaking me out a little bit.  I've gone back and forth on going through pelvic radiation.  I've been informed as to the possible long term effects and the conflicting evidence on whether it actually helps prevent a recurrence.  I am actually scheduled to begin pelvic tomorrow.  If I don't bolt...

Gardena

Editgrl said:

Treating the symptoms and not

Treating the symptoms and not looking for what is causing them is something that is all too prevalent in Western medicine.  Look at the many women who go for months with uterine cancer symptoms before their doctors even begin to consider cancer.  

There are two things that are frightening here:  the possiblity of these serious side effects, and the lack of acknowledgement of the disease and possible treatments available.  To me, the second is the scarier of the two. Why did that woman have to suffer for 6 long years before she was treated?  That's a crime.

NoTime, your friend mentions that her cancer had recurred, but did she ever receive treatment for her PRD?

I do have to say this is freaking me out a little bit.  I've gone back and forth on going through pelvic radiation.  I've been informed as to the possible long term effects and the conflicting evidence on whether it actually helps prevent a recurrence.  I am actually scheduled to begin pelvic tomorrow.  If I don't bolt...

Chris

I have followed your posts regarding your decision to have pelvic radiation and admire your proactive stance.  You've done research,  gotten second opinions and have asked and poised good questions to this group. I still have one infusion left in my front line treatment but am struggling with the concept of radiation/long term affects/ reoccurrance and distant mets occurring. I am armed w questions for my meet w rad/onco and my primary oncologist after reading this site and researching on my own about my type of cancer. I believe you will make the right choice for yourself, whatever it may be. All the best to you~

NoTimeForCancer

Editgrl said:

Treating the symptoms and not

Treating the symptoms and not looking for what is causing them is something that is all too prevalent in Western medicine.  Look at the many women who go for months with uterine cancer symptoms before their doctors even begin to consider cancer.  

There are two things that are frightening here:  the possiblity of these serious side effects, and the lack of acknowledgement of the disease and possible treatments available.  To me, the second is the scarier of the two. Why did that woman have to suffer for 6 long years before she was treated?  That's a crime.

NoTime, your friend mentions that her cancer had recurred, but did she ever receive treatment for her PRD?

I do have to say this is freaking me out a little bit.  I've gone back and forth on going through pelvic radiation.  I've been informed as to the possible long term effects and the conflicting evidence on whether it actually helps prevent a recurrence.  I am actually scheduled to begin pelvic tomorrow.  If I don't bolt...

Chris, no, she did not

Chris, no, she did not receive treatment for PRD.  She had to dig and dig to find that the information out there, and then, it was all from across the pond. 

As I have said, I have had both external and brachytherapy.  They make you sign that release prior to treatment but they NEVER said anything about this.  Radiologists have to start addressing this.  I didn't care for my radiologist, and if I have to see one again, it won't be the guy I had and we WILL have a conversation!!!  I know doctor's hate when you bring them things you read online.  The good ones will listen and talk to you about what you have read. THIS has to be part of that conversation and POSSIBLE SIDE EFFECTS they talk about.  

Kvdyson

NoTimeForCancer said:

Ladies, this is a good friend

Ladies, this is a good friend of mine.  She is one of the beautiful women who I have met through this fight.  She called me in March 2015 to say her cancer had metasticized and to keep up the fight.  Since someone started a thread on RADIATION I thought this would be a good place to realize the side effects of this treatment.  I don't do it to scare anyone, but to know what can happen.  

https://www.youtube.com/watch?v=WvTR4Q43Hk0

She was addressing a Radiation Research Society.  

 

External Radiation Tx

Wow, this is very scary but also very important. I am scheduled to start external radiation tx this Wednesday but am seriously reconsidering after watching this video and doing more research online. I've sent an email to my rad-onc with my concerns. I'll let you know what type of response I receive. Thank you so much for sharing this information.

 

Editgrl

NoTimeForCancer said:

What I find so tradgic is no

What I find so tradgic is no one listened to my friend's pain.  Her cancer had come back and they weren't even looking at that.  Of course, all treatment has to be weighed, and that is a very individual decision.  

A statement that my BF's

A statement that my BF's radiologist made at a Community Survivorship Forum has stuck with me.  He said "We don't even know all the long-term side effects from radiation because until recently, not very many people were living long enough to HAVE long-term side effects."  I was impressed that he was honest enough to say that in front of a crowd.

 

TeddyandBears_Mom

Editgrl said:

A statement that my BF's

A statement that my BF's radiologist made at a Community Survivorship Forum has stuck with me.  He said "We don't even know all the long-term side effects from radiation because until recently, not very many people were living long enough to HAVE long-term side effects."  I was impressed that he was honest enough to say that in front of a crowd.

 

Chris

So, that message tells us that people are living longer, right? And, are they because of the treatments? Probably yes for most.

Then, the question is.... Live longer and deal with possible side effects or take your chances?

Such conflicting emotions that we have to deal with.

After watching the video, I questioned my decision even on the Brachy. But, landed on the side of glad I did it still. Of course, there is no comparison to the effects between the two therapies. I wish we had very simple black and white choices and decisions. And, I hope you find the answers that bring you the most comfort. Based on that video, there are solutions to some of the side effects as long as we can get the doctors to recognize the issues in the first place! Maybe that needs to be part of the discussion upfront?

I'm thinking about you this morning and hope you are OK.

Love and Hugs,

Cindi

 

ConnieSW

NoTimeForCancer said:

Ladies, this is a good friend

Ladies, this is a good friend of mine.  She is one of the beautiful women who I have met through this fight.  She called me in March 2015 to say her cancer had metasticized and to keep up the fight.  Since someone started a thread on RADIATION I thought this would be a good place to realize the side effects of this treatment.  I don't do it to scare anyone, but to know what can happen.  

https://www.youtube.com/watch?v=WvTR4Q43Hk0

She was addressing a Radiation Research Society.  

 

Thank you so much

for posting this.  I watched it twice.  I think youshould put the link on the long term side effects board.   Everyone on this forum should be aware of this.  Isn't it odd that the tv ads for all the pills they want us to ask our docs for  have a litany of side effects listed but we aren't told all this when we actually have to go through these treatments.

 

How is this lady doing?

EZLiving66

ConnieSW said:

Thank you so much

for posting this.  I watched it twice.  I think youshould put the link on the long term side effects board.   Everyone on this forum should be aware of this.  Isn't it odd that the tv ads for all the pills they want us to ask our docs for  have a litany of side effects listed but we aren't told all this when we actually have to go through these treatments.

 

How is this lady doing?

I thought the same thing,

I thought the same thing, Connie!  Our son has T1 diabetes and there are so many new drugs coming on the market but when they advertise them on TV and have to list all the side effects of them, it really scares a person.  BUT.....I looked at the listed side effects of what he's been taking for the last seven years and the list is just as long - we were just not told about them!!

Love,

Eldri

Editgrl

TeddyandBears_Mom said:

Chris

So, that message tells us that people are living longer, right? And, are they because of the treatments? Probably yes for most.

Then, the question is.... Live longer and deal with possible side effects or take your chances?

Such conflicting emotions that we have to deal with.

After watching the video, I questioned my decision even on the Brachy. But, landed on the side of glad I did it still. Of course, there is no comparison to the effects between the two therapies. I wish we had very simple black and white choices and decisions. And, I hope you find the answers that bring you the most comfort. Based on that video, there are solutions to some of the side effects as long as we can get the doctors to recognize the issues in the first place! Maybe that needs to be part of the discussion upfront?

I'm thinking about you this morning and hope you are OK.

Love and Hugs,

Cindi

 

Risk vs Benefit

No doubt treatments work for some.  I think it really comes down to your individual disease and weighing the probable benefits against the possible risks.  In many cases, the radiation wins out.  The problem is in those gray areas where the benefits are not clear-cut.  And, as NoTime has said, not informing patients of ALL the possible risks.

I have decided not to have the extended pelvic radiation.  I called this morning and cancelled my appointments and have put a message in to speak with my radiologist.  If I am not too far out time-wise from chemo, I will do the brachytherapy.  In my case, with my cancer, numerous doctors could not tell me that having the pelvic radiation would reduce my chances of recurrence. The most anyone would say was regarding having it was "If it comes back, you'll have done everything you could have," more of a mental salve.  But it could come back with the radiation as well, as we've seen here on this board.  And I can always have radiation down the line if it is needed, still keeping it in the arsenal as one of the ladies here has described it.

You've all seen my various posts and know how agonizing a decision this has been for me.  I know you have all gone through agonizing decisions of your own.  All I can say is that this decision feels right for me.  I am also going to contact a naturopath, thanks to daylady for the reference.

While NoTime's post yesterday was not the reason I came to this decision, it brought to a head many of the reservations I had in my own case.

Hope my radiologist doesn't think I'm some sort of flake...  bailing at the last minute is not usually my MO.

Chris

TeddyandBears_Mom

Editgrl said:

Risk vs Benefit

No doubt treatments work for some.  I think it really comes down to your individual disease and weighing the probable benefits against the possible risks.  In many cases, the radiation wins out.  The problem is in those gray areas where the benefits are not clear-cut.  And, as NoTime has said, not informing patients of ALL the possible risks.

I have decided not to have the extended pelvic radiation.  I called this morning and cancelled my appointments and have put a message in to speak with my radiologist.  If I am not too far out time-wise from chemo, I will do the brachytherapy.  In my case, with my cancer, numerous doctors could not tell me that having the pelvic radiation would reduce my chances of recurrence. The most anyone would say was regarding having it was "If it comes back, you'll have done everything you could have," more of a mental salve.  But it could come back with the radiation as well, as we've seen here on this board.  And I can always have radiation down the line if it is needed, still keeping it in the arsenal as one of the ladies here has described it.

You've all seen my various posts and know how agonizing a decision this has been for me.  I know you have all gone through agonizing decisions of your own.  All I can say is that this decision feels right for me.  I am also going to contact a naturopath, thanks to daylady for the reference.

While NoTime's post yesterday was not the reason I came to this decision, it brought to a head many of the reservations I had in my own case.

Hope my radiologist doesn't think I'm some sort of flake...  bailing at the last minute is not usually my MO.

Chris

good for you Chris!

I'm sure this is a common occurrence with them.  Besides, this is YOUR life and last minute or not, you have the final word.

By the way, you should be fine with the time since chemo for Brachy. At least my radiologist said he wouldn't want me to wait longer than 2 months and preferred 1 month. So, you are in between those two timelines. :-)

Take care and I'm glad you are solid now.

Love and Hugs,

Cindi

Editgrl

TeddyandBears_Mom said:

good for you Chris!

I'm sure this is a common occurrence with them.  Besides, this is YOUR life and last minute or not, you have the final word.

By the way, you should be fine with the time since chemo for Brachy. At least my radiologist said he wouldn't want me to wait longer than 2 months and preferred 1 month. So, you are in between those two timelines. :-)

Take care and I'm glad you are solid now.

Love and Hugs,

Cindi

And this is why

I really like the current radiologist.  I sent him an email apologizing for bailing at the last minute and briefly outlining my thoughts.  This was his response:

No apologies necessary.

There is no "right" answer in this situation. I am thankful that you are involved enough in the decision making process that you are telling me what you want and not.

And yes, I am still within the guidelines so I will get my "measurement" appointment set up soon.

Gardena

Editgrl said:

And this is why

I really like the current radiologist.  I sent him an email apologizing for bailing at the last minute and briefly outlining my thoughts.  This was his response:

No apologies necessary.

There is no "right" answer in this situation. I am thankful that you are involved enough in the decision making process that you are telling me what you want and not.

And yes, I am still within the guidelines so I will get my "measurement" appointment set up soon.

Chris

Your radiologist sounds awesome.  As you write, you have radiation as an option if needed. Was thinking a lot about you today,  glad you checked in.

TeddyandBears_Mom

Editgrl said:

And this is why

I really like the current radiologist.  I sent him an email apologizing for bailing at the last minute and briefly outlining my thoughts.  This was his response:

No apologies necessary.

There is no "right" answer in this situation. I am thankful that you are involved enough in the decision making process that you are telling me what you want and not.

And yes, I am still within the guidelines so I will get my "measurement" appointment set up soon.

That's great. Don't be

That's great. Don't be surprised if you have your measurement and first brachy in the same appointment. (I did)

They measured me and then I sat in the waiting room for about 30 minutes for them to put the plan together.

Then, back in for the 4 minute radiation.

I took my Lorazapam 30 minutes before. It helped me relax and also made it easier to lay still.  Just a thought if you need things like that.

I'm so glad you have a good guy to work with. It makes such a huge difference.

NoTimeForCancer

ConnieSW said:

Thank you so much

for posting this.  I watched it twice.  I think youshould put the link on the long term side effects board.   Everyone on this forum should be aware of this.  Isn't it odd that the tv ads for all the pills they want us to ask our docs for  have a litany of side effects listed but we aren't told all this when we actually have to go through these treatments.

 

How is this lady doing?

Connie, you are so sweet.  I

Connie, you are so sweet.  I think that is a good idea to post on the "long term effects" board and will do that. 

I am in contact with one of her best friends who promised to let me know when the gem slips from this earth.  The last I heard she was just sleeping everyday and can't believe she is still with us.  

EZLiving66

NoTimeForCancer said:

Connie, you are so sweet.  I

Connie, you are so sweet.  I think that is a good idea to post on the "long term effects" board and will do that. 

I am in contact with one of her best friends who promised to let me know when the gem slips from this earth.  The last I heard she was just sleeping everyday and can't believe she is still with us.  

I hope she is in no

I hope she is in no pain.

Love,

Eldri