My Meeting with My Rad Onc Today

[Becky]

First said - all is well. I need to say that first. However, I had a horrible meeting today with my radiation oncologist. I DO feel bad about it because it was my fault it went bad and ended bad. He sees me every 6 months. As many know, I had a radiated IDC on the right but a very small DCIS on the left that was not radiated.

Every meeting with him I nudge further on the lack of radiation on the DCIS side. I think I nudge because in a real sense, I do like him but in another real sense, he is not the right doctor for me (he jokes around too much and makes much, much too light of a serious disease. Also, I feel he might not really be into his job but it is his job. Also, he is my mom's radiation oncologist too (although he does not yet know that she is going to change from him too for the "lightness" that he exudes and the fact that when she has appts with him, he asks about me and my family too much and she feels it is her time)). So, for the 10th time, I ask why I did not get radiation on the DCIS side and he says its because my breast surgeon (who truly is the best) told him I didn't need to have it. I was too stunned to speak (without crying - really). Afterwards (about an hour later), I called him and he took my call immediately. In a nutshell, I told him that when I went to him for consultation, it was for radiation. I didn't go to my child's pediatrician on whether I should have radiation, I went to a radiation oncologist who would give me HIS opinion on the matter. The surgeon does what the surgeon does and he does what he does. So, (nicely) he gets my chart and goes over everything saying it was low grade and tiny with extremely wide margins. I was getting rads on the other side and too much lung "might" be involved having it on two sides versus both. Then he states my age and that I wasn't a particular age (which I am not now but was then). I told him that I had gotten at least 2 opinions on everything I've done except him and since he let the surgeon choose, I really didn't have a radiation oncologist opinion at all! He did got over everything and said if everything was happening now, he still wouldn't give radiation (duh, its the only thing he can say)! Anyway, I am distraugh on the medical profession and I am at a loss of what to do. Are bridges burned (because sometimes an encounter like this can make everything right) or not? I like the guy but am stunned at his statement of "blaming" lack of rads on someone else. Yet I do know some things make sense too. What should I do?

[Louise O'Brien]

Becky:

I'm probably not the best person to offer an opinion because I'm so relatively new to this and our experiences in Canada can be very different. Two of my oncologists retired during my treatment - I ended up seeing a new doctor everytime I went for treatment and I ended up with a variety of "insights". No differences as to treatment - just a huge variation in "beside manner" and attention to my concerns.

I understand your concern about "burning bridges" but it seems to me that you badly need some peace of mind and that may only happen if you see someone else.

You presented your case so reasonably, I have no doubt that you communicated with your doctor in the same manner as well.

If he is a true professional - he should understand why you need a second opinion.

You're the one dealing with this - not your doctor. I think sometimes doctors, even oncologists, are not as sensitive to the concerns of HER2 positive women as they should be.

[Becky]

Thank you Louise and I do agree. The fear and problem is that at 4 yrs out, it is too late to get radiation on that side so I am actually scared to find out (as all the studies say) that I should have!!

Picking a doctor is such a crap shoot, eh?

[DanaRT]

This is difficult. I am not sure what to offer. In a sense, the fact that you have not had radiation to the left side will mean you can have it later if needed-of course, hopefully it won't be needed.
I think it's acceptable to question your radiologist about why he is basing his opinion on that of the surgeon's. There seems to be protocal and guidelines all the experts use when creating a treatment plan. Clinical trials and our insurance companies set the standards.
Becky, hope you get solid answers soon.

Dana

[Joan M]

Becky,

I would agree that it might be too late for a second opinion, and you may not want to really know.

I think you have to weigh how much it's going to nag at you. As you said, "for the 10th time," which means that it's still in the back of your mind. I know the feeling. I've been there.

It's got me thinking too. I had two tumors, DCIS and infiltrating bc, and even though I think both were covered by rads, I'm not really totally sure (and they were on opposite sides of the breast). And I stopped seeing the rads onc after the bc spread to my lung last year. It was just too much to see so many doctors.

If you decide to go for a second opinion, I wouldn't even mention it to your rad onc. We like to think that everybody is open but they're not.
Joan

[Gerri]

Becky,

I hate the 'hindsight is 20/20' perspective we take on these things. Here it is, four years later and you still worry about what was(not) done at the time of your treatment. I don't see my rad onc for follow-up - my choice. He was perfectly willing to see me yearly, but left it up to me. I decided to go on an "as needed" basis. Even though I liked him a lot, I wasn’t quite sure what he was contributing to my follow up care. Maybe this is something you should consider. As you said, a second opinion at this point would be of little or no value.

As far as bridges being burned, I doubt it. He obviously knows how you roll and was willing to take your call today even though he had just seen you.

Try not to dwell on the “what ifs” – that is something of which you have no control over. Better to spend your time thinking about something you DO have control over.......hmm....like sex....

Take good care,

[Carolyns]

Becky,

I think that no matter how well prepared and educated that we try to be in the end everything is a crap shoot to some extent. There are plenty of people who follow text book opinions to the letter and end up in trouble. There are others who stumble along and seem to end up in the right place at the right time.

I follow this site and the postings regularly. You seem to be one of the most level headed educated / dedicated members of this community of outstanding men and women. That said, we each make our decisions based on the information we have at the time. You did your best and it was the right decision for you at that time... no one knows the truly right decision. No one person can try two options at the same time to see which one works better. Studies show trends but we are all individuals and no study can predict the outcome of any given patient.

Thank you for posting.

Love, Hope, Peace,

Carolyn

[SoCalGal]

Dear Becky-
I reviewed your history. You had many things as favorable like er+pr+ and you had the real stuff chemo - the big guns - the stuff with the best track records for survival. On top of that you were lucky to get 16 months of herceptin. I think you should breathe out. Let it all go. I swear I know those feelings of the should'a would'a and even feelings of fear and regret but I think you are properly covered and were treated aggressively. You had wide margins. You avoided rads on the heart side...I think it's all okay. There are no guarantees and sometimes despite all efforts this stupid disease wins and other times people are still around (like me) when on paper they should have not made it. I would not get another opinion at this time. I would get another radiation onc since you have to be followed twice a year. Why see someone who rubs you the wrong way? It's not your job to make nice - it's his job to be more professional. You have 5 months to find a replacement. BTW - I was born in Newark. Beth Israel Hospital. 1957!
xoxo Flori

[mcgle]

Becky

This might ease your mind. I have a friend who is 18 years out from a low grade DCIS dx. She was peri-menopausal at the time and the 'only' tx she had was a lumpectomy and five years of tamoxifen - no radiation.

There has been no recurrence to date.

Mcgle (UK)

[mts]

Becky,

I had a breast MR after my first lumpectomy (which had clean margins by the way!) only to find two more tumors (one larger than the one that was excised first) and subsequently had a re-excision for those two. I then did my chemo, rads and Herceptin.

So, three years later I am sitting next to a rad oncologist at the DoD Consumer Research gig I go to and she informs me that because of the numerous tumors (I only had 3) it would be difficult to tell if one tumor sloughed off a cell that grew into another tumor and then that one sloughed off a cell that grew into another tumor, OR did I just have a bad breast that grew bad cells and all three tumors were independent of one another (to me, the likely scenario because of the clean margins after each lumpectomy). Yet no one can answer exactly.
So, her advice (even though I am Stage I) if it were she in my shoes -was that she would have removed both breasts... Wow.
Yes, the rads would have killed the errant cells that likely lingered in my breast after surgery, but that still did not discount the unanswered question of how/why my cancer developed into three unconnected tumors.
So, with the thought of dormant tumor cells, and the fact that I know that my breasts can grow cancer... I am seriously considering having my breasts removed... but will that be enough?
Yes, it took a rad oncologist to enlighten me. Maybe I ask too many questions and doc's tell me what they think I want to hear- but the cancer is relentless and if it can grow in one breast why should I be so confident that it will not grow in the other ?

I honestly feel you are one of the most savvy, self aware and knowledgeable advocates on this board. And if I may, for a moment offer you any advice- I would suggest getting another opinion. Both surgical and rad. Eventhough you love your surgeon, he/she does not wake up every morning with your breasts and his/her chest.
love ya-
Maria

[Hopeful]

Becky,

I have looked high and low for the slide presentation I downloaded about breast surgery from the radiologists' viewpoint for you, and can't find it. What intrigued me was a slide that said, to a surgeon, "clean margins" mean the surgeon has concluded that the margins are adequate for any remining cancer to be eradicated by radiation therapy. This may have some bearing on your surgeon's opinion that you did not require radiation on that breast.

Hopeful

[Mary Anne in TX]

What a deal! Watching you in the past, I know that you will process all this and come to a great decision that satisfies you!
My onc, when I first went to him, asked if I wanted him to coordinate my care. At the time, nothing in my life was in order and I really needed help! I said yes and am so glad that I did. He makes appointments for me with the needed doctors and sends me off to the appointment. When I'm done, he asks me how it went and if I want another referral. My surgeon was totally different (high C/D of course) and I loved him. I've got some D myself, so I questioned him about everything but loved who he was for the job he was to do. I remember that when the surgery was over, he told me and my husband that he had done his part to make sure it was all gone. That so fit his personality! I would trust him with any surgery in the future. I had seen a plastic surgeon about reconstruction, but my onc recommended that I wait until after surgery, chemo and radiation for a variety of reasons. I asked my surgeon and the plastic surgeon and they both concurred. Whew! (But that may have been the only shot they were getting for that surgery with me). When my onc sent me to a radiation onc he said he thought that I would like that it was a woman who was very bright and personable. I did. I really liked her because she spent so much time with me and explained everything to me fully. She left a few months after I was done and I have not seen anyone else since. But I do have a referral if need be.
Anyway, all that yak, yak to say that I so needed a "crew" that were so different, not afraid to speak their minds, but respectful of the others. But I think the bottom line was that my case was pretty much a given. All the nodes and the invasive part made the decision clear to them and to me.
I guess the thing that makes me mad is your rad onc.'s not seeing that you've asked so many times for a reason. Oh, the real problem is that I'm being a "mother"! And you don't need one.
So....scratch all the yak, yak and know I support you using whatever process necessary to get some satisfaction! ma

[Jean]

My Dear Sweet Wonderful Becky, my sister my friend!

I understand 100% how you feel. I always question and review everything a dr. tells me. I feel your annoyance at the rad dr. He let you down...okay enough about him
let's move on....

First of all (knowing how detailed you are) like someone else I know...lol....

Let's consider the following:

DCIS itself isn't life-threatening/ now thats a feel positive side. We still must take it seriously.
It is the future development you are concerned about.
Studies show that women with small invasive bc have shown that radiation after lumpectomy can lower the risk of cancer coming back by 66%...okay...BUT this cannot be automatically applied to DCIS...

First of all that DCIS of yours was small, low grade, was removed and is gone,
you had great margins....another positive.
There are DCIS that remains dormat and never does anything. (hopefully) your DCIS was that kind, no matter anyway, your DCIS was removed.

There was a trial #10853 called the European Organization for research and treatment, this study had 1,010 women...who were followed up after 10 yrs. who had DCIS/half were treated with radiation after surgery/the other half was not.

After 10 yrs follow up 85% of the women treated with radiation therapy had no recurrence of DCIS compared to 75% of women who had no radiation after lumpectomy. The overall surival was THE SAME in both groups.

Okay...the study does show a higher % for those who did receive the radiation...but Becky it is not a MAJOR
marked difference. Besides you know how I feel about stats...so you have a slight difference ....

Second: You had aggressive treatment with chemo/and/herceptin...in the early stage we are going to see new data on those groups of women who are early stage and had that treatment.
Plus - you are taking a AI which is another arrow in your quiver to fight this disease.

You eat right, you exercise, you take your supplements,
you are doing everything you can do.

While it is not unusual for the surgeron to advise the rad dr. what he believes should be considered for treatment (I know my surgeon did send detailed notes over to the dr.) one would think the rad dr. puts his 2 cents on the treatment plan. If you are in need of seeing a rad dr. in the future, I would seek
another two and then decide who you believe to the better dr. for you of all three men.

The what if's and should haves will destroy us. You are 4 yrs. out now...you are doing great...and I am sure you will continue to do so. You will stay on top
of your breast care and if anything should arise....in that breast you are on top of it.

Please feel better and rest your mind...enjoy the holiday weekend.
I love you.
Jean

[hermiracles]

Dear Becky - you are such an amazing intelligent and compassionate woman! - it's hard to imagine you could be in this situation, given your level commitment to your own and others healing. You are a true inspiration sister.

I dont feel able to give you any advice - I'm sorry. I may come back later after i've had some time to think about it - I just know you deserve the best sis.

BIG hugs and prayers & all the best for you Becky.
Blessings
Hermiracles

[Margerie]

I am sorry you had a putz rad onc! I wonder why some people choose healthcare as a career.....

I know you know as much as possible about the situation (darn that Dr. Google) but what you need to do is find peace. What will get Becky her much deserved peace?

Some possibilities I can think of:

* second and maybe third opinion now about risks of no rads on that side and where to go from here?
* BRCA test? (have you had one?)
* consider bilateral recon?
* acknowledging you had aggressive treatment and the stats are on your side and you can really being at peace as is?
* full denial mode (kind of a nice place to be, I am pretty much there now..)

Of course some of these are radical (in some opinions ) and some are not. None are easy for sure.

I would drop the putz like a hot rock.

Best wishes for good answers for you friend....

[Faith in Him]

Dear Becky,

I feel your frustration with your Rad. Onc. I think it is unfortunate that he passed the buck. But, I have full confidence that you will make the right decision for you.

warm wishes,
Tonya

[AlaskaAngel]

Well, Becky, I will post a link that maybe should be included in the encyclopedia for newbies. It gives some idea of how the decision-making and recommendations happen in some locations. But as a friend pointed out to me, these are mostly institutionally based discussions and one can also choose to get recommendations from private practices or docs from outside the institution that conducts these internal discussions. We DO need to understand how these things happen.

For example, I did not know that at some tumor boards, patients can participate -- although due to "cost", even at those institutions it doesn't always happen that way.

The discussions are by necessity going to be very technical, and brief given the specialists that are part of the discussion. I don't know that most of us at time of diagnosis would be adequately able to interpret what is being discussed, but still -- I think at the very least we should each be provided with documentation of the issues raised and the conclusions and recommendations reached.

And I think Becky would then have had the precious information she needed in time to make her own choices about treatment.

I also believe that given the direction science is obviously taking, there should be an endocrine specialist sitting as part of each tumor board.

Here's the link, to provide a general understanding of how these discussions happen:

http://www.acponline.org/clinical_in...t07/breast.htm

[RobinP]

Becky, I've known you a long time here on her2 support and I know how obsessive and aggressive your are concerning your bc tx. I really think that your radiologist oncologist is not a good match for your intelligent, proactive and serious personality. I agree that a new doc with excellent credentials is just what you might be most comfortable with. Dr. Lagios and Silverstein are experts in pathology and surgery and write alot about radiation recommendations for DCIS. You might want to google and check out there recommendations. From what I understand, low grade DCIS, which reoccurs less than high grade DCIS, is more diffuse in nature than high grade and that is why it is often radiated, to make sure they get it all. However, a wide enough surgical margin clearance can help reduce the need for radiation. You got to go back to your path report and find out your margin clearance measurement. Is it at least five mm or more? On a positive note, you do frequent surveillance and have had extensive adjuvant tx for low grade DCIS via chemo and arimidex. Hope you find peace in this matter.

[Melissa]

Hi,
I think you're okay. We will always have a lot of what if's... Unfortunately what we have to worry about is the cells that got away. Some research I have seen says radiation is still new, 15-20yrs for brst cancer. Radiation has it own risk. We really don't know what it means for us (women who will LIVE for another 40 -50 yrs). I do however think it's important to feel comfortable with and to respect your doctors. Although he did call you back quickly, important for me. You're smart and we look to you for info, you'll make the right decision.

[Becky]

Dear Friends,

I have had a few days to think, ponder and also consider all of your fine words of wisdom and advice.

First off - I need to say that when I initially pick a doctor, I seem to do a pretty bad job of it. Although this rad doc is a good guy, I can't stand people (of any profession) that don't answer questions directly especially when you ask the same question during each meeting and get different answers and all answers point to someone else's opinion. I would much prefer his opinion or references to studies or even observations.

That said, I need to comment on some of your excellent comments.

Gerry - Many women who have had rads see their rad onc about one month after rads are over and maybe also 6 months after that. Then, that's it. Even some women who are friends of mine from my cancer center and got rads here and use this practice never returned (even though it is this practice's protocol to follow patients for at least the first 5 yrs). These women say its just too much - too many doctor appointments. I go primarily for the extra insurance of another professional breast exam on the dcis side more so than the cancer side. Most rad protocol I have read doesn't have the rad onc involved too long in your life. My excellent primary care physician could step into this role as I also agree with others (Flori, Jean...) who say I should be diligent (as I do have an unradiated dcis with no firm explanation (scientific one) on why not. All these exams do is determine "lump freeness" If a lump was found, any doctor is going to order a mammo and ultrasound and then if need be, off to a surgeon. The rad onc is not special in this regard but seeing a doctor is.

Angel - your tumor board link made me rethink this common practice and its pros and cons. We can all think of the pros - multidisciplinary board with a comprehensive treatment plan. There are many pros for the patients (more so than trying to disband them for the cons).

The con is that a tumor board meeting is a meeting. I am a business woman and I am a meeting queen. Nine times out of ten, I can come out of a meeting with exactly what I want - whether it be what I am going to do or what others are going to do. So, let's use my example of no rads on the dcis side. Once when I asked the question he said the tumor board decided and a few days ago he said the surgeon decided (an my surgeon is one determined bitch freak and I LOVE her). Maybe nobody went up against her opinion (happens in legal meetings, business meetings - why SHOULDN'T it happen in medical meetings (ie: tumor boards)). Meetings spread decisions out among the crowd and spread the wrong decision among the crowd too (We all decided. It wasn't my fault). It also allows you not to think about what you would really do if it was up to you. You might need to do more work . Also, you may not want to take the time to argue (ie: have 4 more cases to discuss or worse yet - its Friday and its 5pm - lets get this over with so I can get home. Us patients do not want to realize that to the doctors, this is just their job and they do want to go home or rush the meeting so they can finish their paperwork and go home or that they are going on vacation tomorrow and are daydreaming and didn't even hear that someone else recommended no radiation and they just agreed yes and didn't even know what was said).

Don't get me wrong - I don't think they should by any means do away with tumor boards. I just think we should all be acutely aware that they are business meetings that doctors attend. We as patients that live or die on these decisions must understand that. When newly diagnosed you think, "they brought my case to the tumor board so I am getting the most expert advice" but you should investigate and discuss the ins and outs of that advice. Perhaps even who said what and did anyone else NOT agree but was out voted. This too is important.

As far as me, I will dwell on my issue now and again. I will be more diligent and go on a jaunt in NYC with Jean come New Years for a Dilon test at the 6 month mark from now on (mammo and 6 months later a Dilon). I have come to realize doctors as people whose job is physician just as some people are businessmen or lawyers or accountants. Some good, some bad, some great, some average etc.

However, nobody is like you set of fabulous ladies. I feel humbled to be a part of your group and I am embarassed to bring up such a trivial issue when some of you are facing huge obstacles or your disease was worse than mine to begin with. None-the-less, it shows how vulnerable the disease makes all of us and how we are here to help each other and others outside this group navigate the medical profession and our own fears and demons.

Thank you all very much