In two minds about radiation...any idea?

[fullofbeans]

Hi all,

In brief my BC and mets were treated together since the spread were simultaneous. When I was first diagnosed for BC only I was meant to have rads after I finished my chemo, and until recently I thought that is what was on the card.

I called my oncologist yesterday to ask when I would be starting since I am eager to finish in case i get taken in a trial I am applying for. Anyhow he said that nothing was now planned because they usually do not give rads to mets people because they control it with chemo.

So me thinking:
1-I am a NED and I like the idea of beleiving that I will stay in remission forever and therefore I should do the rads as planned. Just in the off chance that I do indeed stay off mets, imagine the irony of a local recurrence? not funny..

2-Well, lets face it rads is not fun, I am getting a better now from chemo and enjoying it no end. Rads can also have sides effect. If I was a scientific lets face it mets relapse is so much more likely, so why go though the agro..

I would like to hear your thought on this..

Love
Karina

[MJo]

I say take the radiation. Please take no chances with Her2, especially if you are NED at Stage IV. Yippee. In the future, docs will know enough to spare us unnecessary treatment, but it's not that way yet. Go play some slot machines if you want to gamble. Hugs. MJO

[MJo]

Wait...It didn't register that your onc told you no radiation. How about getting a second opinion, just to be sure. Second opinions are good. MJO

[R.B.]

I am no expert and these things are very complex.

Some people like to inform themselves others are happier simply to trust their advisors.

There are a number of posts on this site looking at risks outcomes and treatment. The problem is that everybody is different, risks are different, the regeimes are different, diagnoses are different, stage etc.

If you search on the web you will find details of potential side effects of radiation, which can be significant.

On the other hand there are trials showing significant benifits for radiation.

There are also some trials looking at radiation only radiation plus chemo etc, but as usual it is complex and one has to look carefully at the basis etc.

Hopefully those with more knowledge than me can add to help you on your journey. I do have some links and will try and find them.

RB

[Bev]

Well in the US, I thought if you had a lumpy, rads were almost mandatory. If you had mast it was a case by case situation. It's not clear to me why mets would change the above rule of thumb. I guess you need someone to explain their chain of thought.

Rads are stressful but easy. I'll worry about the side effects tomorrow. I'll probably live to eat those words, but you can only choose the treatments that they have today.

From my completely unscientific background, yes I would think that mets were more likely than recurrence for HER2+. If rads are reccommended, are you willing to be a guinea pig to see if they are unneccessary?

I think this is a strong case where a second and third opinion is warranted. With no mets I can't give you great advice. I hope everyone's advice can give you an idea of what to shoot for. Good luck, BB

[tousled1]

When I had my bilateral mastectomy I didn't think I'd have to have radiation. Due to the fact that I had such extensive lymph node involvement, I got 35 radiation treatments - the last 5 were considered boosts. I was receiving my Herceptin at the time and I was told that Herceptin with radiation was better than radiation alone. All,I know is that I wanted to do all I could to prevent a recurrence. If I were you I think I'd be inclined to get a second opinion.

[sarah]

Hi,
Maybe it's a question of timing. I was told by several oncologists that if you have mets - they do chemo and then radiation so they can see more easily what's working.

If you don't have mets, they do chemo and radiation together.

good luck. I think most people would say do radiation as well.
sarah

[fullofbeans]

Thanks for your opinions..

I will my oncologist (the Prof. as oppose to the registrar whom i talked to on the phone) on Wednesday, he may send me to the radiotherapist to decide.

I have decided that I would let them make the decision this time, but I'll make sure it is not based on cost saving.

Thanks all
Karina

[julierene]

Radiation to the liver? If I remember correctly, that is very frowned upon because of the extreme amount of side effects.

[fullofbeans]

No not to the liver. First time I hear about Lisinopril, how do you feel on it?

[julierene]

Lisinopril is for the heart damage from Herceptin. My MUGA went down to 43% and they had to give me the ace inhibitor to prevent big heart problems. No side effects.

Oh, and I got treated with radiation to my back and leg bone while on the chemo for the Stage 4 second dx. So I got both. I asked about radiation to the liver, and they said they would never do that - they would rather cut it out.

[fullofbeans]

Thanks for your answers and thanks for the clarification Julie, always curious.

I saw my oncologist today and he said that I should not rush for the radiation (breast i.e. for local recurrence) and that I should pursue the trial instead, and that if the liver is still clear in a year then consider it again.

I think it makes sense even if it is admitting to myself the reality of mets..

All love
Karina