Disclosure

lionessdoe

Hate to be the bearer of bad news. But for those of us who had radiation and are  suffering and surviving lymphedema, we have so much more to be concerned about! Heads up Folks! If the information in the following link had been disclosed to you prior to signing off on radiation, in lieu of what you were told or informed, would you have had radiation any way?

http://www.leiomyosarcoma.info/raddiscuss.htm

purple32

RE: "edited and compiled by doctordee"

Is this a trusted source ?
Is there evidence of all this in PubMed ?

I decided to reply for this very reason- I am one of the rare ladies who opted out of radiation (against med. advice)  I still got lymphedema---something many ppl blame on rads alone. Not so!

There are pros and cons to radiation. I believe it helped to save my husband's life and prevent recurrence (so far).

With my lung disease, I believe it would have further compromised my health.

Personally, I wish I had been given more (SOME!) info on LE. I was not.

dlb823

I had the same initial reaction:  Who is "doctordee?"  It also sounds (although I just skimmed the article) that he/she may be talking about a wider range of RT than just for bc, which could be an entirely different protocol than most of us with early stage bc got -- more aimed at internal organs than breast/lymph nodes.

My other thought is that we need to read up on these potential SEs from sources that we know for sure are reputable, and if RT is more risky if you have osteopenia (which I have and I assume is fairly common in post-menopausal women), for example, we need to know that so that we can ask the right questions of our rad onc, to more realistically weigh the pros & cons.

Unfortunately, none of us plans on getting bc, and once we're dx'd, it all usually moves so fast and we're in such a daze, it's hard to know what you don't know or what a doctor isn't telling you.

But I think I'll run that article by a rad onc I know and see how true she thinks those concerns really are.   Thanks for sharing it, Doe.      Deanna

Kicks

I live (operative word LIVE - not suffer/exist) with LE and it started before I started rads.

Didn't read anything that would have changed anything I did.  Did not spend a lot of tiime 'studying' it as there didn't really seem to be anything that pertained to me and my DX.  Any point of view can be found on the internet being spouted by 'experts' - really need to be careful.

Yes - I would do exactly what I did having 25 rads if I had it to do again.  

purple32

If I had the info on LE, I woud not have had my LX surgery  ... or my LE.

I didnt want to study up on it, but a good educatiional pamphlet would have been enough  so that I could have discerned for myself that I would be a likely candidate.

Having such early stage BC and no meds or rads, I would have skipped the LX - and the LE.

Just would rather have had the kowledge since it is my body that I have to LIVE in!

lionessdoe

In addition to the information we have available on this website, you will find a reference on the bottom of our Treatments page to the website of Dr. Doreen Kossove. DoctorDee as she is called by many, is a physician who also has Leiomyosarcoma, and she has devoted much research and time to creating a website to help inform Leiomyosarcoma Patients. If you are unable to find information you need on our site, you might wish to look further to DoctorDee's site.

lionessdoe

Click on the green Fetchees in the article.

kcshreve

I opted out of radation for several reasons. The main one was that I did not believe the "simple" choice was all that simple.  When I asked for this kind of info, I was told there was nothing to worry about.......my heart felt otherwise.  

lionessdoe

I wish I woul have. The side effects just keep getting worse for me. I recently had a test for cardiomyopathy because my diastolic remains in the 90's. They couldn't find a vein for the IV contrast and had to guide a wire in my upper arm via ultrasound to pull the IV through. I've never bounced back from it.

purple32

lionss

RE: Cariomyopathy

May I ask if you are taking any of the ALs or other meds the onc suggest after BC?
Cardio problems are more well known as a SE of them than rads.

AGAIN, I have had NEITHER. 

I feel screwed enough by my LE...so far.

lionessdoe

No I'm not. I refused. I didn't want any more side effects from anything. I was already in enough pain and had to keep functioning in a high stress job to bring home the bacon. I knew it would hit me hard like just about every prescription I have taken. Yellow canary here!

lionessdoe

Ct of heart revealed intraluminal narrowing of the mid section of of my left anterior descending artery. Left lung is smaller now too. Veins so scarred they had to use an ultrasound to guide the IV for contrast with wire in upper right arm. Research says large breasted women whose tumor is close to the chest wall are more likely to end up with this part of heart and lung in radiation field.

Cortisol  (stress hormone) has dropped. Getting ACTH injections during a cortysyn test November 28th. Results will determine if further investigation to thyroid, parathyroid, and or pituitary is neccessary.

I'm telling ya Ladies, we have more to be concerned about. If you have lymphedema don't assign every symptom to just that! OK?

purple32

Ct of heart revealed intraluminal narrowing of the mid section of of my left anterior descending artery. Left lung is smaller now too.

I'm sorry. This was precisely why I did not have rads!  With my luings and my tunor being clkose to the chest wall and on the left, I refused.

Still, dont assign all to rads either. I have LE.  Furthermore, I have thyroid issues and so do LOTS of women on this forum.... so many in fact that,  I am nearly convinced there is a link betrween thyroid function andcertain sub types of BC...but then, I'm not  a dr.

Good luck to you.

lionessdoe

I have Le too. And RIBP. I only know one thing: the 12 page list of possible side effects of chemo I signed off on, and had to quit after 3 infusions instead of the 18 I was scheduled for, was far more inclusive than what I was given to read about the effects of radiation.

We need to talk about this. This has to be revealed. I'm glad you turned it down!

purple32

I'm glad you turned it down!

With my lungs, I really didnt feel the trade off/benefit  was worth it. I still think it is a gamble tho' and if I had good healthy lungs, I am sure I would have taken it for residual cells.

Alicethecat

Hi Lion and ladies

I did know about the potential long-term side-effects of radiotherapy:

http://www.webmd.com/breast-cancer/radiation-therapy-overview

But as it has such good results in helping reduce the risk of recurrence:

http://www.cancerresearchuk.org/cancer-help/type/breast-cancer/treatment/radiotherapy/about-breast-cancer-radiotherapy (after breast-conserving treatment)

http://www.sciencedaily.com/releases/2010/06/100602141727.htm (after mastectomy)

I decided to go for it!

With HER2+ and a grade 3 tumour (taken out by mastectomy), I was not willing to take the risk of not doing it!

Everyone is different, of course, and I guess another chat with your onc is called for if you are not happy with what you've heard so far.

Good luck!

Best wishes

Alice