January 2011 Rads

Hi all. Gingerbrew I hope all goes well for you (am holding your hand all the way, virtually, if you know what I mean).

I'm new here (this is my first post) but I'm due to start rads on 31 January so I guess I qualify.

BUT I'm still not mentally committed to doing rads.  I've had the planning and the tats but every time I think about submitting to a treatment called radiation therapy I go to goo.  I think the reason I'm so unsure is because I don't feel like my rad onc is being straight about my real risk of a recurrence and that he's just using scare tactics and plucking stats out of his a**.  So instead of just hovering around this forum I thought I'd ask for help.  Here goes:

I had an Oncotype score of 15 which gave me a recurrence rate of 10%.  I know it's about chemo, but my baseline risk is 10% and if I have chemo my risk is still 10%.  I also did an online nomogram called IBTR! (stands for Ipsilateral Breast Tumour Recurrence) which also came back at 10% - without any RT I might add. 

But my rad onc says my chance of a recurrence without RT is 30, 35 could be as high as 40% (and last visit it became 50%).  My question to him was How can I be as high as 50% in your office, but 10% on my Oncotype (hadn't done the IBTR! then)?  He said because the Oncotype assumed a course of RT because it's the standard treatment.  

So I rang Genomic Health and they said they don't know anything about anyone's tumour size, age, type of surgery, treatment, etc etc - except for their explicitly stated assumption about hormone therapy.  They just test the tumour sample they're provided with.

My question is: If my rad onc is saying I have a roughly 40% chance of a recurrence, is that 40% of the 10%?  Am I being asked to do rads for a maybe 3% - 5% benefit?  I can't get him to understand relative and absolute risk - he just blathers on about how there are no absolutes with BC (I know that) and that if I was his sigificant other he would insist on RT. 

Or am I wrong to think my 10% recurrence risk on the Oncotype is relevant?  I'm assuming a 10% risk is a 10% risk is a 10% risk.  Sorry if my question is a bit garbled - I'm feeling pretty garbled at the moment.

One last thing  - I'm in the process of getting a second opinion, but the only other onc on my little island works as a junior to my onc, so I don't hold out much hope that there'll be much disagreement between them.  Thanks for any help anyone can give me.

Thanks suepen.  I see you're an Aussie too!  I haven't looked at my profile yet to see where I can put that info.

I deliberately didn't include my DX because my question is really a statistical one.  Having a straight answer to that (from my Onc I mean) would enable me to weigh up the risks v the benefits for me.  All I'm asking for is a fair idea of where I stand, instead of being scared into treatment with inflated risk assessments.  I know rads with lumpectomy is standard of care.  But it's still my right to work out whether my perceived benefit is worth the potential risk.

To answer your question I had a lumpectomy, IDC 1.7cm, Stage 2a, Grade 2, ER/PR+ve, HER2-ve.  Big clear margins, 1/1 nodes with very small amount of cancerous cells at the bottom of the s/node indicating, according to my surgeon, that it was caught in the very early stages of moving.  

My question to the forum is if I have a risk profile of 10% (is that correct, since it's based on the risk profile provided by the Oncotype?) and my Onc says my risk of recurrence is 30-50%, is that 30-50% of my 10% baseline?  Can I do rads and improve from 90% to 93% or 94% or 95%? 

I clearly don't trust my onc very much - but that's largely because he said quite confidently that the Oncotype took into account radiation therapy, which they clearly don't!

Sowhatsnext - The radiation therapy is as you know to prevent recurrence in the breast.  The chemo is for systemic prevention and the oncotype relates to that. The article Suepen posted says it well.  The bigger problem I see is the lack of confidence in your doctor.  I think it is also potentially a problem that the second opinion doctor works under him.  I don't know if he will give you a different opinion but he may be able to explain things better.  Perhaps for your peace of mind you could just lay things out flat.  Bring someone with you to appt and have your questions on paper.  Maybe that would help.  It is very hard to do a treatment when you don't feel positive about it.  It really sounds like you need your doctor(s) to clarify their views.  Best wishes to you, I am glad you have come here to talk.

Anybody get irritated with their Doctors when they don't tell you the details? I clearly asked how long radiation would be after he said 6 or 7 weeks in my first appointment. I asked so, which is it 6 or 7? when I came back to start treatment. He said 6, so I said, ok that takes me to Feb 18 and he said yes. Today, I find out that's just the normal radiation then boosts are added. Why didn't he say so?!!!! I don't think docs get it that we mark dates on our calendar and countdown. 

Anyone else had that many? That would be 30 plus 8 boosts. I need to clarify with him though as I left there so pissed I couldn't talk any more. ha.  

Michcon - Do you think it would help to bring someone with you?

lestwin - Sounds like you have been through a lot!!  I don't have any specific suggestions but wanted to give you a cyber hug!! 

SoWhatNext - I believe your onc is telling you that with all treatments considered, you're still at a 10% chance of recurrence.  If you did NOT have radiation, then your chance of recurrence would jump by 30% - 35% (or whatever numbers he told you).  As the other ladies have stated, it is assumed when you choose lumpectomy, that radiation will be a part of the treatment, so in effect, they assume your recurrence will only be at approx. 10%.  That is the number we all face, as there is simply no cure.  But it is a much better number than it was in the past.  Without radiation, you are increasing your risk of recurrence by an awful lot.  I fought this same battle, and finally decided to trust my docs and the history of thousands of women who have gone before me.  I don't like the idea of radiation either, but I like less the huge risk of recurrence without it.

I was told flat out that if I refused radiation, my only option was a mastectomy, which would basically yield the same results as lumpectomy + radiation.  What a horrible decision to have to make, but finally decided to take it in baby steps.  So far, I'm happy with my decision, but I went through a LOT of stress several months ago to get there, especially when my margins were not clear and I had to get a re-excision.

michon - Good for you.  I wish I would of had the nerve to do that.  My rad onc just assumed I knew everything or he told me and I forgot.  Excuse me, I am not that old yet.  I thought I had heard it all when he wanted to get me set up with an oncologist after we tried Mammosite and it failed.  I told him I already had an onc - saw him before surgery and was told no chemo, just rads and pills for 5 years.  Boy, did he look stupid!  Of course, he did not believe me and went out to check with his dumb nurse.  Yea! I was right.  

You should not had to ask about boosts. How would you would have known?  I had no idea about boosts until I read it on the Nov Rads thread and then it was like getting blood out of a turnip to get information about it

Okay!  You got me going - I will get off my soap box now - sorry. 

mjb - I'll ask what my dose is when I see my onc next week.

sue:  No I'm not having physio yet.  They only took 21 but apparently you have 40 under each arm.  The rad dr. did say to squeeze a ball watching tv and mentioned something about it after rads about physical therapy but was not specific.  I'll pin them down on Thursday (cat scan) if I can and also tell them not to underestimate my skin allergy's as it will suck if I am itching for months.  I'm also allergic to hydrocortison creams etc.

 Les

Suepen, I started treatment last Tuesday, so have had 5 now.  I had been using aloe, and I've been told to add Eurocin (sp?). I bought some, and it's a very thick cream...  almost hurts to apply it because I have to press so much to spread it around.  Would it be kooky to maybe warm it in the microwave to see if it will thin out? 

Rad tech said today that radiation stays in the body for two weeks, so that would account for persistence of my burning rash.  Never heard this before.  I think he meant EFFECTS of radiation. He's not the brightest....Would appreciate any clarification. P.S. He's the tech who still can't resist making stupid jokes about my purple velour pants,  Barbara