Radiation therapy or not?

Not sure if you have the BRCA gene so do not quite know where to go with this, also not sure of the type of cancer and it's grading so can't offer too much info but in my  situation I just wanted to smack that bitch out of the ground so I took everything they offerred.

Ask all the questions in your pack or what you can get form here and do some research.

Speak to your medical team and figure out where you need to go. you may not be able to have radiation again at a future date if you have it now so that needs to be taken into account but please ask those involved.

Cheryl

Thanks Cheryl,

I have had the BRCA test and got the results (negative) just prior to surgery - and had a bilateral mastectomy to tackle this head-on.  Originally I was told that if I had breast conservation surgery (ie a lumpectomy) I would need radiation after chemo and surgery.  I've had chemo and surgery and thought that most of the "work" was behind me.  This changed on Tuesday when my radiation oncologist gave me my three options - and a week to respond.

I'm trying to research as much as possible.  And I thought this forum would be the perfect place to do that!  I've also contacted my surgeon to get his input.  Friends have been invaluable too.  Ultimately, though, I know I have to be at peace with this...

Let me tell you that radiation is so tiring, you won't be ready for it as you go along happily thinking the surgery/chemo is bad and this should be a blast and it is in some small ways but the faitgue, nausea and burning can be a bugger.

I found the radiation technicians to be a joy and the spirit in the unit is usually a lot happier than oncology as everyone is usually at the end of treatment so there is more chatter.

They have many creams to help with keeping the skin moist and please stick to  the regime they give you, it can be invaluable for any skin lesions/burns if they arise.

They will do a couple of pointer tattoos on your chest and rib cage to line you up for the laser so dont panic about them they are as small as a pin prick, I brag about mine as they are the only 'tatts' I will ever get.

Whatever decision you make be at peace with yourself over it but  rads aren't so bad.

Cheers

Cheryl

It all depends on the pathology of your tumor eg size, hormone receptor status, lymph node involvement. You need to know what your risk of recurrence is to weigh up your options.
Radiotherapy will decrease your risk of the same cancer coming back in your breast.
If you don't know these things, you need to go back to your doctor and ask him/her all the information so that you can make an informed decision.
Write a list of questions including
What is my risk of the cancer coming coming back if I choose not to have radiotherapy.
What are the side effects of treatment
Good luck!
D

Thanks Dan,

The surgical pathology were, in the words of my oncologist, "better than expected", lymph nodes clear and tumour reduced and removed.  I thought I asked all the relevant questions of the radiation oncologist during the week, but I have also contacted my plastic surgeon as I'm concerned about radiotherapy and it's effects on my implants.

At the moment I feel like there are two parts of my medical team offering different courses of action - based on their area of expertise - and they're creating confusion for me.  On the upside - there's a wealth of information from a tonne of amazing women right here!

Thanks again :)

My pleasure love, happy to help. Do you have a breast care nurse or other specialist cancer nurse. That can help you?

DansBoobs gives good advice. 

Ask your radiation oncologist to put numbers to the odds of the cancer coming back.  For example, mine said that for me the odds of the cancer recurring with NO radiation were about 20%, but WITH radiation less than 5%.  These are just my odds, yours may be different.  So, for me, radiation it is -- a 15% drop is worth whatever the hassles are.

Also, ask if you can get a second opinion - everyone looks at the world through different eyes and it would help you a lot to talk to someone else and see what their take on things is.

As to clinical trials, make sure you understand exactly what you might be signing up for.  These trials usual run with 2 different sets of treatment offered to patients.  Ask exactly what the 2 treatments entail and what the possible outcomes of each are FOR YOUR SITUATION.

Good luck Mon and do update this blog so we know how you are getting on.

Knowledge is power and there will come a point when you know what it is that you want to do and, importantly, why.

Cheers, Esther

Thanks Dan and Esther.  Dan your advice is invaluable!  And instant!  Glad I'm online at the right time today!

I have a great medical team (oncologist, chemo unit, oncology surgeon, plastic surgeon, breast care nurses).  Everyone has been really lovely.  I always feel informed and empowered about my treatment and have been given the time to digest all the information before making any decisions... But I guess, at the moment, I feel tired.  I really did think I was getting close to the end of the treatment phase.  Being told that there is more treatment on the horizon when I thought that I would only have a final round of chemo to go has left me feeling a little down.  And I know the only way to combat this is to stay as informed as I can be - but I'm also wary of the deadline given to me by the radiation oncologist.  Not as much time as I'd like to be have but then we all seem to be time poor, don't we....

Dear Mon,

Hang in there and don't be too hard on yourself.  If you want a few extra days to decide, then ask for them.

We'll all be thinking of you.

Esther

Thanks Esther!

I'll definitely let you know how I go...

Have a great day

:)

These bc decisions are awful aren't they.You're damned if you do and damned if you don't. I have had breast cancer twice and what I've come to realize is that when more than one doctor tells you that you MUST have the treatment then you probably should. If they are leaving it up to you then percentages of cancer returning are most likely VERY low.I had a lumpectomy in 2003(similar pathology to you and18 nodes all clear).I had a 30%chance of it returning if I didn't have radiation and was told I HAD to have it.Chemo was an option and entirely my choice.Well I had radiation and no chemo and 7 years later it came back in the same spot -I was in the unlucky 8% apparently.I was told there was only a 1%chance of it recurring on the scarline if I'd had a mastectomy. I've had the mastectomy and chemo 2 years ago and seem ok now,just on Tamoxifen.All these statistics can sometimes make us feel like we are gambling in a casino- I've come to hate them. I'd be worried about the implants too cos your skin loses elasticity with radiation.Your plastic surgeon should give you the low down. It's ultimately your decision- so after your research go with your gut. All the best for the coming week.

                                                    Tonya xx

Thanks Tonya.

I heard from the radiation oncologist (S) this afternoon.  My plastic surgeon (G)rang him to discuss my situation.  Anyway, I've been given another week by S to decide what happens next.  I was going to ring G, but haven't as yet.  I felt bad ringing him the first time (too needy - but I know I have every right to be!) 

At the moment I chop and change between feeling tired/ just wanting the treatment to be over and that niggling feeling of "did they get it all?"  But does that feeling ever go away - for any of us?

So I'm using my extra week - and I'm thanking my stars for this website!

Mon x

Hi Mon

i wanted to add to the responses you have. I have had chemo and have recently finished 6 weeks of radio. Let me tell you it was a breeze for me, nothing like chemo at all. I was able to go on as normal and if you follow all the instructions on creams and body washes you will be ok the only thing i had was a burn like feeling in the area that they treated but that was to wards the end and cleared up in a few days.

You do need to look at all the information given to you and make the choice but dont be scared off by some side effects as it affects people differently. 

Wishing you all the best.

Olga

XXX

You are right-either way you will have that niggling feeling for a long time.It took me about 2yrs(each time) to get abit of confidence back in my health. If you don't have radiation then another question you might ask your team is how will they monitor your new boobs(you know,surrounding skin/tissue)- can't have mammograms.

                                     Tonya xx

Thanks Olga and Tonya -

I've been very fortunate, so far, with side effects - so the potential side effects for radiotherapy aren't an issue.  Although the CT scan is!  I had an anaphylactic reaction back in January because of the iodine.  If I could avoid that happening again, I would! 

Do you ever have that feeling of wanting control back over your body and your health??  That's how I feel at the moment.  More me, less intervention from outside sources.  Without the niggling feeling...

Great question to ask Tonya - thanks for that.  I'll add it to my list!

Mon x