Let's talk about radiation

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 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.  

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.  

 

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 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 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...

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 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.  

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 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.

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.  

 

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?

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

 

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 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

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.

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 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 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 pain.

Love,

Eldri