My Meeting with My Rad Onc Today - Page 2

Gerri · 08-31-2008, 09:52 AM

Becky,

Your posts are always so well thought out and informative. You are so right when you say that this disease makes us all so vulnerable. While it is true that there are those on this board facing far more than many of us, I appreciate the sharing of all experiences, as “trivial” as they may seem - nothing with this disease is to be taken lightly. The fears and uncertainties are something we all share. By posting about the “little things” we all pick up tips of how to deal with fighting this disease, and more importantly we see that we are not alone in this battle. We learn what to look for and what to demand from our doctors, and we are reminded that as much as we wish our doctors had super powers, they are really just like us – human beings and as such can and do make errors.

You have once again caused me to rethink my follow up treatment plan, and I thank you for that. In my original reply to you I stated that I do not see my rad onc. What I didn’t say is that I saw him regularly for the first year and a half and it was then that he gave me the choice to continue or not. I must confess it was the constant doctor appointments that made me decide to stop seeing him. Looking back, his breast exams were quite thorough, and for that reason I am now considering adding him back in – thanks for the kick in the butt (unintentional I am sure) on that one.

I also alternate mammos and MRIs every six months. I have an MRI coming up in October and I am already dreading it. It takes every ounce of mental strength I have to last the forty five minutes in that tube! I think I will start looking around to see if I can find the Dilon somewhere within driving distance – New York is a bit far from California

.

We really are all in this together and the support we give to each other is invaluable. Thanks again Becky for your constant presence on this board. I always appreciate your posts and gain so much from your insight.

Much love,

AlaskaAngel · 08-31-2008, 09:58 AM

In a word.... YES. While tumor boards are intended to bring in different points of view, they are just meetings and are subject to all the problems that you point out. I pointed tumor boards out as a way of explaining to those who wonder how the recommendations for their treatment may have been decided -- and pointed out that even so, they are still free to get private opinions -- or even, at some institutions, at least sit in for the discussion. Another weakness of tumor boards is that since they are generally institutionally based, they are much more likely to favor whatever equipment they have for treatment as well as whatever philosophy about treatment their specialists happen to prefer. Even if an onc or a surgeon might think the rads therapy at another center is better, how likely is it that he is going try to butt in to influence the rads recommendations from his own institution? Or even recommend to his patients that they have their rads elsewhere, where the equipment may be more current?

As always,

AlaskaAngel

Barbara H. · 08-31-2008, 10:14 AM

Hi Becky,
It doesn't matter if I am stage 4 and have had to deal with some tough issues. Your fear and concern that you received the correct care is just as important. I agree with your insightful comments about the tumor board. Many physicians are excellent and try to do their best with consideration of the well-being of the patient. Nevertheless, they are human and and can be expected to make mistakes. No one can use the top analytical skills all the time or can be expected to put forth their best thoughts at a meeting. It can also be due to personality. Not everyone is willing to argue their thoughts or opinions.

Your wisdom about this difficult topic is invaluable to newly diagnosed patients and to those of us who will continue to make decisions about our health needs. Thank you for continuing this discussion.

I also recommend the book "How Doctors Think" by Jerome Groopman, M.D. It gives an enlightened portrayal of what physicians deal with.

Best regards,
Barbara H.

Becky · 08-31-2008, 06:02 PM

Barbara

I did read the "How Doctors Think". It was good. I was a bit nervous on the radiology section though but also glad that there are doctors who listen and want to cure.

Have a nice weekend

ElaineM · 08-31-2008, 06:38 PM

I would find another radiologist to talk to if I were so upset about my relationship with the one I have been seeing and couldn't stop thinking about it. I think the body, mind and spirit work together, so if something is preventing that I would seriously think about doing what I could to make things better.

Barbara2 · 09-01-2008, 09:02 PM

I did not have radiation for a 4.5+ cm tumor, clean margins. Although I had a mastectomy, the size of the tumor made me wonder if radiation should be considered.

After completing chemo, I asked my onc about whether or not radiation was in order. He said, "Your tumor is gone. The cancer is not there any more. You don't need radiation." He went on to discuss the cons of radiation; it is not good...mentioned the atom bomb...so if we have the choice to avoid it, we should.

Months passed and after reading about others with a similar size tumor, and some people having had mastectomies plus radiation, I decided to call the onc in Rochester, Minnesota, who I had talked to for a second opinion before starting chemo. This time I wanted her opinion regarding radiation treatment for my (late) situation.

After a thoughtful pause, she said, no, too much time had passed, and I should continue to follow the advice of my local oncologist. I felt in my heart that if I had asked her during the window of time when radiation would have been an option, she would have advised to go with it. But too much time had passed (6 months, more? not sure...) so she would not recommend it.

If ever I have a recurrance in that breast, I will believe that radiation would have taken care of lingering cancer cells. I also live with the shoulda-coulda thought of not having had taxol. I wanted it, didn't get it.

All the best to you.

tricia keegan · 09-02-2008, 05:17 PM

Becky I just saw your post here, I don't know,is four years too late to radiate?
If it were me, I think I'd decide to go forward knowing I had done all I could on the advice I was given at the time.
When first dx, none of us knew much about this and it's easy in hindsight to know what we should have insisted upon, I do that myself frequently. I hope this never returns for you, if it does at least a small consolation is that that side can be radiated but...please don't beat yourself up over this. I love my surgeon who is the best in the country and was my first port of call but I now realize he told me only what he felt I needed to know at the time.
I've since learned so much more, but believe there's no point in second guessing ourselves or them. I've lost enough friends to know this is a crap shoot so, there are no guarantee's either way whatever you do. Be as confident as you can in going forward, but if you feel the need to see someone else and it is possible to do it at this late stage then do it if it makes you more at peace.

CLTann · 09-02-2008, 06:40 PM

Becky,

Being a part of this great forum, I have always respected your opinions and meticulous researches. Your own case and your analysis of what these tumor boards probably do fit my own interpretation of what is going on at those meetings too.

As to your lack of radiation to the left side, my feeling is that it may not be a problem at all. I always am sensitive to the radiation issue. Radiation causes cancers. You may be doing yourself a favor by not having the radiation. Endocrine therapy is probably more effective than radiation anyway.

I hope you are in the class of patients having reached the four year mark and near to the point of declaring "cured". Best luck.

Sheila · 09-02-2008, 06:48 PM

Becky
I know that this must really bother you, for you to post...you always seem so in control...I understand your frustration. Will getting another opinion put you any more at ease? Probably not, especially if this new rad onc differs on what "should have been". You take excellent care of yourself, and you are on top of everything when it comes to your health. I feel we do the best we know how, and this disease still picks and chooses with no rhyme or reason....don't waste your health on the what if's...save it for enjoying the beauty in everyday, you are a positive person Becky, we all get smarter everyday...and you are one of the best teachers!

Jackie07 · 09-02-2008, 07:55 PM

I wondered if the Her-2 status influenced your doctor's decision not to do radiation on a DCIS. I had the standard (33?) radiation after lumpectomy in 2003. The surgeon did not get all the cancer, everyone (mammagram, oncologists...) missed the recurrence. What I mean is that perhaps they know from research or data that radiation will not prevent recurrence or progression of Her-2 breast cancer.

I also had a big fall-out with my medical oncologist just a couple of weeks ago. I think we all are on edge because of this terrible disease. But we also learn from this experience, we discover about ourselves as well as others.

This is such a great place for us to come together to share our feelings and exchange ideas. I want to thank Joe and Christine as well as everyone else again to allow us to 'breathe' here.

Donna · 09-03-2008, 02:01 PM

Dear Becky,

I just read your post, didn't read the answers, but here's mine: get outta' there! There are so many really good physicians out there, don't spend another iota of a second with this guy. Get the best out there, cutting edge - start over - this is life threatening stuff as we all know - and get your Mom out of there, too. I am really big on making sure I am COMPLETELY comfortable and confident in my medical choices, especially now that I have access to the best via internet information. The fact that you are almost apologetic in the start of your post tells me you know this isn't right, and I am here to push you out that door!

Keep us posted?!?

Love, Donna