What to do about medical team's cookie cutter approach?

ChicagoReader

Hello everyone.  I've been lurking here for over a month and have found it to be tremendously informative and comforting.  But the more I read about others who have discussed the options with their doctors and made careful choices, the more concerned I get about my own experience.

Although it's still relatively early, so far the medical team where I'm being treated has left me feeling like they don't see it as their job to provide me with information about all my options so that I can make the best choice for my situation.  Instead, they seem to have decided in advance on one or two cookie cutter approaches to DCIS, regardless of individual factors or preferences. 

Although they're OK with discussing the options on their list, even then they want to keep it brief and I feel pressured to just pick one and get it over with and stop wasting their time with my questions.  If I ask about options that aren't on their list, it's even worse.  For example, they tell me (not ask) that I'll be having lumpectomy with rads, MX, or BMX.  When I ask about the possibility of having lumpectomy without rads, they react as though that's outrageous and wherever did I get that idea!  (I've be printing the NCCN Guidelines that list it as a treatment option for DCIS and taking that to my next appointment.) 

I haven't even met with the RO yet -- that's next week -- but the "we'll decide what you need" attitude has been so pervasive here that I am very concerned.  It started with the radiologist who did the biopsy, continued with the folks in breast surgery (surgical fellow, nurse, surgeon to lesser extent, etc.), and MO.  At first I was flabbergasted by it, but now I'm just worried.

I'm very happy with my internist, who's also at Northwestern.  I'm highly confident in the surgeon's skills and expertise.  I just don't know that I'm getting the best advice about treatment for me.  This concern is causing me almost as much stress as the diagnosis itself!

I would appreciate others' reactions and suggestions.

 

Moderators

Dear ChicagoReader, Welcome to the BCO community. We are glad that you reached out here. While you are waiting for some feedback from our members here are some links to read from our own site about Treatment Options for DCIS andSecond Opinions. We are not sure whether or not this information will be helpful. We know from listening to the experiences of many of our members that having a good relationship with your treatment team (in whatever way that is meaningful to you) is very important to your treatment process. Good luck with all of this and keep us posted as to how things progress for you. The Mods

LAstar

I think a lot of folks don't ask questions and just do what their doctors suggest. I was fortunate to have a BS that was willing to discuss the literature that I'd reviewed, but sometimes he just had to laugh because it was apparently uncommon. It was also apparent that he was not terribly current on the literature, but fortunately he was appreciative of the reading I did and the abstracts I brought. It is good to be aware of the research. I was surprised when I saw the sample sizes for some of the statistics I'd read. But it is also stressful to feel so responsible for your treatment and to feel like you can't trust your team. If there are options for second opinions, I highly encourage you to explore that. I think the treatment for DCIS is fairly standard, but i think the grade of DCIS should help determine the treatment path. Best wishes to you!

AZ85048

ChicagoReader - Hi and welcome to BCO! If you haven't been there already, I encourage you to follow this link and read Beesie's thread, 'A Layperson's Guide to DCIS'. It will answer numerous questions you may have and educate you as to fact versus fiction with regard to DCIS. https://community.breastcancer.org/forum/68/topic/... It's all very scary at the beginning, but take your time and don't let anyone rush you. These are your decisions to make; not theirs, Knowledge is power - especially with regard to this disease, so read the header to Beesie's thread, and check out the links in the very first post. Wishing you the very best!

april485

Hi Chicagoreader, so sorry you find yourself with this dilemma but I truly believe that you should explore a second and maybe even a third opinion before making your decision. It is YOUR choice whether you wish to have rads and or any treatment whatsoever for this. You have plenty of time without fear of this getting much worse so use it to your advantage. I feel strongly that you need to trust your team. A lot depends on location of the lesion, size, grade and other factors as to whether you proceed with rads after your choice of surgery. Also margin size plays a role as well in terms of lumpectomy.

Please take the time to get another opinion or two. There are lots of hospitals (Dana Farber, MMSK and others) and doctors who welcome your path slides to review for a fee (sometimes insurance will cover, sometimes not) and will let you know what they feel.

Many women here use Dr. Michael Lagios who is based in SF. http://www.breastcancerconsultdr.com/

Best of luck whatever you decide

MinusTwo

Chicago reader - While they did test ER/PR for my DCIS, they don't normally test for HER2 over expression. I had a double mastectomy for DCIS, grade three, ER/PR negative and no nodes involved. Even though the tumors were large, they got clear margins. No further treatment - no chemo, no rads, and of course no hormone treatment. All my docs at a major medical center were convinced they'd gotten it all & everyone was happy. It was considered normal that I didn't need any other treatment.

When I had my recurrence in just under 2 years later, it turned out I was HER2+, which doesn't have as many treatment options, and one node positive. Second time & had chemo & rads. Never the less I would do exactly the same treatment over again the 1st time - nothing but BMX.

So there are lots of issues to be explored in your diagnosis besides just DCIS. I do think if you have a lumpectomy only, it's common to follow up with rads.

ChicagoReader

Thanks for the warm welcome and helpful replies. At this point, I have a long way to go before making up my mind. I just wish the doctors were willing to discuss options with me so that I could feel confident about making a deciision.

I'm learning a lot from reading the various resources and materials on these boards. I am so glad I stumbled on this wonderful community. Thank you!

have2laugh

ChicagoReader- Also prepare for the fact that recommendations may change after lumpectomy. Not all uncommon to require more than one lumpectomy and pathology results can differ a bit from initial biopsy. Looking back I didn't feel prepared when I had to make further surgery choice 5 days after first surgery. I think knowing that was a real possibility and discussing what ifs ahead of time might have made that easier. Best of luck!

queenmomcat

Thank you for posting this question! I was wondering much the same thing. (similar diagnosis, too, I think?) My experience with gynecological oncological surgeons last year was similar.

I don't think they're being totally uncaring, or even unduly aggressive, but more the sense that "Of course the patient will go along with what we suggest."