Let's talk about radiation

TeddyandBears_Mom said:

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.

Don't know if it will be the first day.  My appointment is Wednesday morning.  I didn't realize they may do the treatment then, too, and didn't know to ask.  Probably doesn't matter, though.

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.  

 

I have found, time after time, that doctors are reluctant to believe, or tell you, that the treatment they recommend or have given you can result in side effects outside the well known. Why, after being presented with evidence and anecdotal reports do American doctors continue to ignore these life altering side effects? Why are doctors so often prone to viewing women's "complaints" as psychosomatic? 

I wonder, when men have testicular or prostate cancer, are they recommended to have 20, 30 or more treatments of pelvic radiation? And, if they have had radiation, do their doctors feel that their later abdominal complaints are unrelated? I am so sorry that your friend was met with such cavalier treatment. She is so right- if just one of these doctors would have done further testing and really pushed to find a reason for her distress, her reoccurrrence may have been discovered in time.

The paternalistic attitude of the medical establishment has to stop. It is what allows these travesties to continue. They are here to help us, they are not our fathers, our God. They are as fallable as the rest of us and need to show both humility, compassion and , most important curiosity,  when presented with results that are not what they expected. 

I will be eternally grateful to my oncologist for his skill, his understanding and willingness to listen to me. We discussed radiation for over half and hour and then my radiation oncologist also spent at least that long answering my questions and presenting the pros and cons of radiation. Both agreed to withdraw their initial recommendation for pelvic radiation but did continue to recommend brachytherapy as I had had cervical involvement. Even so, neither mentioned the kind of problems that were brought up here. 

More and more I am starting to believe that so much of the treatment we receive is a cr** shoot! Do we need 6 or more chemo treatments or will 3 be enuf? Do we need chemo at all? Which chemo drugs are the best? How much does diet affect are chances of reoccurance? I think when we are presented with our diagnosis of cancer, we are all frightened and tell ourselves and our doctors that we want to do everything that can be done to cure us. We say yes, yes, yes do what ever it takes. Doctors, the medical establishment, need to do a better job of letting us know that there are many options available, and what those options can do to us, what best fits our particular situation.

Sorry for the rant, but your friend's video so poignantly brought out for me so many things that I have pushed out of my mind.  In love and caring, Sandy

molimoli said:

Oh the added validation that I feel,Thanks No Time

I have been already harmed by Cancer, I am living with Cancer my way, Cancer created a full time occupation for me and that is the job of vigilantly keeping my person out of harm's way by not associating myself with Cancer's  colleagues,which are : Chemo,Radiation, Brachy, Confusion, Mind blowing life haulting fear and Depression. If my cancer  can't be cut out ,dieted out or herbed out it gets to stay put and I get to live until such time( Thanks Charley Brown). Time is running out as we ponder and worry.

Cancer is like a bad partner,we are doing 'it' reluctantly and must all choose How.

Quote:

Everyone should know that most Cancer Research is largely a fraud,and that the major Cancer Research Organizations are derelict in their duties to the people who supports them.

Amen, Moli

 

I would, however, still do chemo had I to do it over.  If I recur, my decision might not be the same.  I would have to look and consider carefully Based on all the factors at that time

I realize that my case goes back a good while, but I feel it's important to state my piece.  I was diagnosed with endometrial cancer in early 1999.  I obtained three opinions before starting treatment.  I selected a highly-regarded gynecologic oncologist with about 30 years experience to perform my surgery.  At my initial consult, after reviewing my slides, my gyn-onc told my husband and me that after surgery some women need no radiation, some need only brachytherapy, some need only pelvic radiation, and some need both. 

I had a radical hysterectomy because when my gyn-onc opened me up, he saw a bulbous swelling involving the upper cervix.  He also found palpably enlarged lymph nodes on the left side and large nodes on the right side, so he performed a pelvic and paraaortic lymphadenectomy.  My gyn-onc advised me, confirmed by pathology, that I had a deeply-invasive grade 2 tumor which had invaded more than 80% of my myometrium or uterine wall.  The tumor was fairly large (approx. 4 cm.), had extensively invaded the lymph-vascular space, and involved the lower uterine segment, which was another risk factor for recurrence.  As you might guess, I fell into the group of women who my gyn-onc firmly believed needed both internal and external radiation. 

Because of the distance I lived from my gyn-onc, I went for radiation at an unaffiliated hospital about an hour away.  I just pulled out my radiation consent form from 1999, and it provides an extensive, but not all-inclusive, list of side effects.  Suffice it to say that anyone reading the list gets the idea that radiation is serious business.  The consent form also states, "I understand that even with the most careful planning and administration of treatment, unforeseen side effects may occur because of the unique and varied tolerance of individual persons.  Late effects of the treatment may not always be predictable, and may be influenced by subsequent treatment for this or other diseases."  I know my radiation oncologist discussed side effects with me, but I can't remember specifics.  (I may have more details in my notes, but haven't gone through them to draft this post). 

I do have intermittent bowel effects from radiation.  Are they at times inconvenient?  Certainly.  However, I am very healthy and can do many things that a lot of other women of my age (68) cannot.  I am usually at the gym taking a variety of classes 5 or 6 days a week.  I recently retired and when I'm not down the shore, I have been running up and down the steps in my house at least 50 times a day.  When I plan vacations, I do consider access to bathrooms, for the days I have to make more frequent trips to the restroom.  However, my husband and I travel several times a year.  

I guess my real point is you certainly have the right to refuse pelvic radiation, because the risks of long-term side effects are real.  However, I would strongly advise you to make sure that you are not jeopardizing your life.  You clearly won't have any side effects if you succumb to the cancer.  For years I've heard women say that they feared the side effects of radiation, so they decided to decline radiation after surgery because, "I can always get it later, if I recur."  Based on all I've read, learned, and seen over the years, I'm not convinced that a cure can always be achieved on recurrence.  My advice is to just be sure that if you decide to decline pelvic radiation, you do it after being fully informed about the potential consequences of that decision. 

Wishing you all the best,

Maureen

MoeKay said:

Please Be Thorough In Your Radiation Decision-Making

I realize that my case goes back a good while, but I feel it's important to state my piece.  I was diagnosed with endometrial cancer in early 1999.  I obtained three opinions before starting treatment.  I selected a highly-regarded gynecologic oncologist with about 30 years experience to perform my surgery.  At my initial consult, after reviewing my slides, my gyn-onc told my husband and me that after surgery some women need no radiation, some need only brachytherapy, some need only pelvic radiation, and some need both. 

I had a radical hysterectomy because when my gyn-onc opened me up, he saw a bulbous swelling involving the upper cervix.  He also found palpably enlarged lymph nodes on the left side and large nodes on the right side, so he performed a pelvic and paraaortic lymphadenectomy.  My gyn-onc advised me, confirmed by pathology, that I had a deeply-invasive grade 2 tumor which had invaded more than 80% of my myometrium or uterine wall.  The tumor was fairly large (approx. 4 cm.), had extensively invaded the lymph-vascular space, and involved the lower uterine segment, which was another risk factor for recurrence.  As you might guess, I fell into the group of women who my gyn-onc firmly believed needed both internal and external radiation. 

Because of the distance I lived from my gyn-onc, I went for radiation at an unaffiliated hospital about an hour away.  I just pulled out my radiation consent form from 1999, and it provides an extensive, but not all-inclusive, list of side effects.  Suffice it to say that anyone reading the list gets the idea that radiation is serious business.  The consent form also states, "I understand that even with the most careful planning and administration of treatment, unforeseen side effects may occur because of the unique and varied tolerance of individual persons.  Late effects of the treatment may not always be predictable, and may be influenced by subsequent treatment for this or other diseases."  I know my radiation oncologist discussed side effects with me, but I can't remember specifics.  (I may have more details in my notes, but haven't gone through them to draft this post). 

I do have intermittent bowel effects from radiation.  Are they at times inconvenient?  Certainly.  However, I am very healthy and can do many things that a lot of other women of my age (68) cannot.  I am usually at the gym taking a variety of classes 5 or 6 days a week.  I recently retired and when I'm not down the shore, I have been running up and down the steps in my house at least 50 times a day.  When I plan vacations, I do consider access to bathrooms, for the days I have to make more frequent trips to the restroom.  However, my husband and I travel several times a year.  

I guess my real point is you certainly have the right to refuse pelvic radiation, because the risks of long-term side effects are real.  However, I would strongly advise you to make sure that you are not jeopardizing your life.  You clearly won't have any side effects if you succumb to the cancer.  For years I've heard women say that they feared the side effects of radiation, so they decided to decline radiation after surgery because, "I can always get it later, if I recur."  Based on all I've read, learned, and seen over the years, I'm not convinced that a cure can always be achieved on recurrence.  My advice is to just be sure that if you decide to decline pelvic radiation, you do it after being fully informed about the potential consequences of that decision. 

Wishing you all the best,

Maureen

 

that this has been the most confusing issue so far in my cancer treatment.  When the doctors themselves can't agree on what would be best, it is tough as a layperson to try to wade through research, limited studies, conflicting results and come up with the best plan.  Not to mention factoring in your specific type of cancer and all of the other individual factors.  I never thought that I, non-doctor, would end up having to be the one to decide which is the best, most effective treatment for me.

If a majority of my doctors were in agreement as to what the best course of action would be, I would probably be on board with them. Unfortunately, they are all over the place.  

I do appreciate your comment, Maureen and I am so glad that you joined the discussion and more importantly, that you are cancer-free.

Chris

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

You are the boss of your person,do your thing. He would be a greedy flake to hold a grudge.

Taking charge is empowering. I applaud your decision because it's yours after much ponderings.

Showers of NED blessings I wish for you for the future.

You may still be second guessing yourself but go with your knowledged gut.

Plenty love. Moli

Editgrl said:

Let me just say

that this has been the most confusing issue so far in my cancer treatment.  When the doctors themselves can't agree on what would be best, it is tough as a layperson to try to wade through research, limited studies, conflicting results and come up with the best plan.  Not to mention factoring in your specific type of cancer and all of the other individual factors.  I never thought that I, non-doctor, would end up having to be the one to decide which is the best, most effective treatment for me.

If a majority of my doctors were in agreement as to what the best course of action would be, I would probably be on board with them. Unfortunately, they are all over the place.  

I do appreciate your comment, Maureen and I am so glad that you joined the discussion and more importantly, that you are cancer-free.

Chris

Beautifully said Chris, They too are confused ,that's why they are all over the place.

Moli. Hugging.

EZLiving66 said:

Hello Soup!  I'm glad you

Hello Soup!  I'm glad you found us.  The ladies here are great and will give you their honest opinion on just about anything.  I have not had any radiation but the chemo caused a lot of problems with my digestive system.  My doctor recommended the probiotics and I do believe they have helped.

What was your diagnosis?  What Stage are you?  Did you have a total hysterectomy?

Wishing you all the best!

Love,

Eldri

yes I had a total hysterectomy. I'm grade 3C and it's clear cell which I understand isn't a good thing. I felt so much better after the surgery, but the radiation was harder and I hate the internal. Just one more of those