am I crazy for wanting a 2nd opinion?

Hi 5kidsMom,

I also questioned the need for radiation, although my situation is different than yours.  

I went for a second opinion for rads, not to mention second and even third opinions for my entire treatment plan, and feel totally comfortable with the decisions I made for my treatment.  With regards to rads, I went outside the standard of treatment and only radiated my axilla and supraclavical, not my chest wall.

I believe you should get as much information as possible, so that you can make an informed decisions for the best treatment for YOU.  Since your request for a 2nd opinon was approved, I say go for it.  The more information the better.

I'm 3 1/2 years out... but back when I had my surgery I thought if you had a mastectomy and node negative radiation wasn't necessary...only for women that had lumpectomy in case any cancer left...it's worth a 2nd opinion...

5kidsmom, you didn't get any of your questions answered, you were treated as if your opinion didn't matter and your questions weren't taken seriously - heck yes get a second opinion!

Even if you decide to go ahead with the rads you need to feel comfortable, not only with the decision but with the doc and the facility doing it.

Best of luck.

Leah

5kidsmom - I had BMX with 2 positive nodes, AND done 5 weeks later, but both MO and BS say no rads needed. I addressed the rads question again right at the end of chemo and MO said it was not needed.  Also saw the BS right after chemo, asked him again - he said no rads.  I was never referred to a RO for a consult.

I think this is the first time I have read about 4x A/C shrinking a 6+cm tumor down to nothing.  That's incredible!

As far as the radiation, in view of your chemo and the pathology, it does seem like it would be overtreatment, which means you definitely deserve to have your questions answered as to why a doc feels it is neccessary.  What more do they hope to accomplish?   I have had to say to doctors, "I am not understanding you," and I don't agree to any treatment until I have an understanding of it.  Good Luck in getting all the info. to make your decision.

Cycle - I found one!  My second opinion consult rad onc was very open that I was a borderline case.  She gave me the pros and cons, and gave me a very good understanding of rads and how it fit into my particular case.  She also said she'd be comfortable if I opted for rads, but equally comfortable if I declined them.  In the end, I declined rads.  But I agree that as a rule, surgeons recommend surgery, med oncs recommend chemo, and rad oncs recommend radiation.

5Kids - ABSOLUTELY go for a second, or even a third opinion.  YOU are the decision maker, NOT the doctor.  A doctor's role is NOT to decide your treatment, but to make recommendations, and it is their responsibility to give you the reasons for their recommendations and to answer all your questions so that YOU are comfortable in making the decision. You and your doctors are a team, but you are the head of that team and you are the one making the final decisions.  If a doctor does not understand that, and is unwilling to give you the information you need to make an informed decision, then you need to remove that doctor from your medical team and find another one.

The doctor works for you, not vice versa.  Could you imagine telling your boss, "Gee, Boss - on this really important issue - I've made the decision.  You need to take a particular action, and I'm not going to answer your questions or even tell you why you have to take this action I'm telling you to take.  Just do it because I said so."  How long do you think you'd have a job if you pulled that stunt with your boss?  If you wouldn't do that to your boss, there's no reason to allow your doctor to pull a stunt like that with you.  Good luck!

5kidsmom Go with your instincts.Radiation is not a walk in thepark for everyone.I truly wish I had not been talked into it.

What to do what to do.  This really sucks.  I also went to the RO yesterday and he wants me to start Rads in 6 weeks.  I went into the consult with the words of my BS and MO on my mind.  "You won't need Rads".  Now I feel stuck, I'm boarder line and I could go either way.  I don't want to make the wrong decision.  This part really sucks!  RO really thinks with age and grade that I need to do this and I always have to deal with this language barrier.  Thank you ladies for your info and guidance.   What to do, what to do!

I'm glad to know some of you have found ROs who don't think everyone needs rads! 

I hate the guidelines.

I am a person, not just a statistic. I have a name, a face, a medical history. I do not like being put in a category.

Recently I saw an article about how ER+ BC patients over 60 tend not to get much benefit from Tamoxifen. Well, I was 58 1/2 when diagnosed, and I have to wonder: did they actually analyze every age? Fifty-five, 56, 57, 58? Or did they just lump everyone into a group? Forty to 49 and 50 to 59?

You can pretty much bet they just put us into 10 (or maybe 5) year age groups. So they really don't know if 58 1/2 year olds didn't get much benefit from Tamoxifen either, because they had me lumped in with the 50-year-olds. I realize there are financial and other limitations in these studies, but really! It pisses me off.

5kidsMom, I think you need to get some other opinions. Have you ever mentioned where you're located? Maybe some of the others here could recommend some awesome ROs.

And a big BRAVA! to you for refusing to accept your role as a mere statistic.  

I had a mastectomy as part of my treatment plan.  I was told by my surgeon that up to three nodes, no radiation and more than three, radiation would be recommended.  You had no nodes.  But your tumor was large and you have a strong family history and you are also Her2+, and this all puts you in a high risk for a recurrence area.  Perhaps this is the reason for the suggestion of radiation?  Definitely get a second opinion! 

5kids: first of all, I do think it's very unlikely one doctor in a practice will recommend something other than what another doc in the same practice said. They just do NOT do that. 

I'm in OC, and sadly that's just far enough away that I don't have any names. But I agree that UCLA, or USC, would be worth trying. Are you right in LA or somewhere on the outskirts? The reason I ask is that one of my friends is a diagnostic radiologist who's worked in LA county, and I could ask her if she has a recommendation. Probably the docs she knows are on the southern to southeastern end of the county.

However, regarding the comment about the difference in treatment for a 71-yr-old vs a 41-yr-old: many/most specialists believe that BC is an entirely different disease in different age groups. When a doc sees a minor BC in a woman under 30, s/he freaks out. When a doc sees it in someone under, say, 45, s/he is very concerned. With a woman over 65, it's a little bit ho-hum.

It's not because someone over 65 doesn't have as many years left, but because research has shown that cancer in an older woman is frequently less aggressive than it is in a younger woman. It's just a different disease.

Has your BS or MO given you a list of ROs with whom you might consult?