am I crazy for wanting a 2nd opinion?

cycle-path

I talked to my doctor friend and she educated me on some things I didn't know. Please note that these are my words, not hers, and only based on what I came to understand from our conversation.

She explains that, of course, all they're trying to do is prevent a recurrance. Apparently, the original status of the tumor is a better predictor of recurrance than the post-chemo status. She also confirmed that your age is a big factor. So that's why the RO is pushing for radiation.

I got some specific RO recommendations and will PM you with those. 

ccjj

5kidsmom....  Just returned from mayo clinic in Mn yesterday regarding my own radiation 2nd opinion.  Our dx are different, but I can tell you what he said.  I saw a medical oncologist who said he would only recommend rads if my tumor was large or I had lymph node involvement that had extronodel extension and/or numerous lymph node involvement.  The radiation oncologist was more wishy washy. He said he would be 55% against rads for me but I could maybe get about a 2-5% benefit in overall survival if I did it. He also mentioned tumor size as a basis for deciding on rads. Based on your tumor size, I dont think your going to find someone to not recommend it. They are following the guidelines and it would probably be considered malpractice so to speak to not recommend it. Unfortunately this whole dx of breast cancer is about making one decision after another. You'll have to hear the stats and then decide what is right for you.  Good luck with your decision. 

5kidsMom

Well after waffling over this back and forth and back and forth, I'm going through with the radiation.  Spoke with my MO Tuesday, and talked with the nurses at the place where I was going to get the 2nd opinion.  Everyone I speak to, and most of the articles I read, point to me being recommended to get the rads. 

 I'm still debating refusing the axillary radiation.  No nodes were positive when they did bx before treatment, or when they did the sentinal node bx during surgery.  My RO wants it because "I'm sure if you took out all the nodes, there would be cancer somewhere".  To me, the translation is "I don't believe your biopsies".  Just on the fence with that. 

cycle-path

Mmm, I love waffles.

"I'm sure if you took out all the nodes, there would be cancer somewhere." Well, dammit, then why do they remove any nodes at all? If the information they get from the biopsies is useless, why go to the trouble and expense? This response from your doctor just plain pisses me off. Maybe he has another reason and isn't articulate enough to explain it, but what he's said here seems arrogant to me.

Here's a recent article about radiating the axilla: http://www.breastcancer.org/treatment/radiation/new_research/20110912.jsp I have to admit I'm a little confused by it, but you might consider showing it to your docs. 

5kidsMom

Cyclepath, his response pisses me off too.  Why the heck did I go through the pain of the SNB?  It was one of the most painful things yet, but apparently as far as he is concerned, I didn't need to bother with it.

 I'm just at such a loss.  Everytime I "decide" something comes up and makes me doubt my decision.  My simulation is scheduled for tomorrow, and now I'm ready to cancel. . . again.  Cancelled my first one too.  Wouldn't the doc love that. 

 Saw that article so now I'm doubting again.  They saw an enlarged node on my MRI pre-chemo, and that is one thing he specifically mentioned.  The article is confusing, and I have a feeling I know how my RO would "translate" it 

cycle-path

I know just what you mean. I wish I could do something to help.

Lowrider54

I did decline the radiation.  I had 8 months of CMF chemo and I just wasn't going to be sick all over again with the rads - it was only offering me a 2% decrease in the chance of a recurrence and where they wanted to hit me with the rads was my sternum and right at the site when I broke it in a car accident - my feeling was that the 'shadow' on the sternum was going to be arthritis and the rads were not going to do anything for that.  Turns out - 11 years later, that is exactly what it is - so rads really wasn't what I needed.  I know, hindsight is 20-20 so we all have to make our own decisions.  Funny, all the broken bones from that accident in 1977 always shows up as a false positives  on my PET scans along with old softball injuries so I always end up with a follow-up MRI.

Anyway, I got 10 1/2 plus cancer free years before the mets - and if I had the rads, add 2% - I don't think I did myself any harm opting out of the rads.  Just my personal experience to share but everyone is different, just make the best informed decision that you can and go with it!

Wish you the best!

LowRider

5kidsMom

Well for now, the decision is that I'm going to call in the am and ask to have a consultation before going through with the simulation.  Think I'll take my husband along in case this guy becomes easier to talk to when a man is there.  I hate to go through with the simulation unless I'm absolutely committed to rads, and at this point I'm just not.

I appreciate all the opinions . . . . . really helps to talk it out.

lrr4993

Maybe I missed it, but I do not see anything about whether you had a lumpectomy or mastectomy.  If you only had a lumpectomy, I would be shocked if any doctor did not recommend rads.  It is the standard of care for lumpectomy treatment.  I questioned it too. . . to both my rad onco and med onco.  My rad onco just said "aggressive cancer .  .  .young . . . 50% risk reduction . .  .blah blah . . . the usual."  My onco gave me two studies that I think were intended to convince me but really did not.  I ended up doing it simply out of the fear of not doing it.  I wish now that I had not.  I breezed thru chemo.  I am still having problems because of rads that I finished in february.  It did a lot of damage to my breast tissue and I am very afraid that I am going to end up with cancer secondary to rads.

oandtolivo

Your age, grade of tumor and size are the main factors. My RO said it's a 5% reduction in recurrence for me.  I had a rt Mx and 6 rounds of FEC/Doc.  I really didn't want to do Rads , but now I think it's for the best.  I'm 34, grade 3 with multifocal tumors over 2cm each.  My BS said I had clear margins with 9 clear nodes removed, but I'll roll the dice and go with the specialist on this one.  This was one of the hardest decisions so far.  Good Luck

I'm only getting Rads over the breast not to my clavicle.  So you may want to ask how large the area is that he wants to treat.

5kidsMom

If my doc could just give me percentages like that I feel I could make a better decision.  When I saw him, there were no percentages--oh wait, he did say that the risk of heart damage was 1%, something I don't buy. 

My age, the grade and size of tumor all point to me getting the rads, I guess I'm uncomfortable with WHAT we are radiating.  If the lymph nodes were negative, what's the point of radiating there?  If studies are showing that internal mammary node radiation doesn't improve outcomes, why do it?  That leaves just radiating the "mastectomy bed", based on his plan. 

Just want him to evaluate my case based on what IS not what he thinks is there.

cycle-path

5kidsMom, did you go for that second opinion at City of Hope?

5kidsMom

Cyclepath: I didn't go for the 2nd opinion.  Looking at all the reasons I "need" radiation, I felt like the news from them wouldn't be much different.  I was also feeling like the best course of action would be to go back to my RO and talk it out.

So, cancelled my simulation--for the 2nd time, and went for a consult dragging hubby along this time.  The doc was a lot different (or else my attitude was) and sat down to explain everything in depth.  He actually LOOKED at the articles I brought him and explained how they might apply to me. 

A huge piece of the puzzle I was missing, was that apparently cancer spreads first to the axillary nodes, and 2nd to the internal mammary nodes.  I have an internal node that is "clinically positive", and THAT is the reason he believes there is cancer in some of the axillary nodes.  Makes more sense.  He said the reason he doesn't believe the SNB done during my mastectomy, is that I had already had chemo, and my cancer appears to be very chemo sensitive. 

He spent a lot of time with us, and I feel good about going forward with the rads.  In fact, this is the first doctor who has had the guts to say up front that my tumor was "huge" and that my cancer was probably much more advanced than I have thought.  I really needed to hear all that he had to say and feel very much at peace with my decision.

Thanks for all the input here.  I've learned so much, and don't think I could have asked the questions I asked, with the info I had just 3 weeks ago.

thenewme

5kidsmom,  I'm SO glad to hear your doctor was better today!  It sounds like he was great today, and it's good that you got some answers to your questions and feel more comfortable with your decision.

I had a very large tumor too, not quite as big as yours - mine was 5 cm.  I also had a suspicious IM node and so it was included in my rads, along with the breast and axillary area.  I'm very pale-skinned/freckled/red-headed, and sunburn very easily, so I was pretty concerned about rads.  I actually did really well with it and had less skin burning than some people with lots more melanin than I have, so it doesn't seem to be a direct correlate.  Hopefully it'll be easy on you too.  I was very, very tired and did have some burning, but after chemo it was a welcome relief.

Best of luck to you and please stick around!  There's always someone here who gets it.

Sherryc

5kidsmon-glad you were finally able to get the info you needed and feel at peace about your decision.  I think that is the most important thing is to feel good about the decision we make.

cycle-path

yay! I'm sorry you have to have axilla rads, but I'm glad you at least understand now why! I really am very pleased. 

5kidsMom

thenewme--glad to hear you didn't have too much burning.  that is one of my worries, and it sounds like we have the same coloring.  Pre-cancer my hair was red, now it's blonde   still have the very pale skin. 

cyclepath--I'm sorry about the axilla rads too, but really feeling like it is the "right" decision for me.  Also feeling much more at ease with the doctor

Looking forward to getting THROUGH this, so I can find the light at the end of the tunnel!