DCIS: How to handle bullying from doctors?

You are in charge. You can listen to their advice but do what you think is right. If doctors knew it all no one would be dying from this disease. I was told I needed chemo because my oncodx number was 34. I said I am not doing chemo but did do 4 years of AI. I was under the impression that AI drugs would not have permanent side effects, but I was wrong. Stick to your guns if a bmx is what you want the dcis diagnosis should be good enough to get you that. Good luck I hope you find a surgeon that will listen.

Oh but my request was backed up by a genetic counselor meeting that gave me a 50% risk.

In the end I already had a nasty undetected IDC.

Brustersmom, I started this at a teaching hospital. I know I sounded combative in my original post, but I'm actually worn out and demoralized with the doctors. I woke up this morning thinking, This is my body; This is my life; All the consequences are mine. So, it should be my decision. The docs seem to think otherwise.

I won't do the radiation, and that's what they refuse to accept. They seem to think that if they just browbeat me enough, I'll fold and do it. But I've been through the not breathing, fighting for air stuff already; done it a lot. Anything that upsets my lungs puts me in a kind of hell. I won't irradiate my lung. I'd rather roll the dice with the cancer and take my chances that it doesn't come back than take what I believe is a sure road to an invalid's life with my lung.

This doesn't make sense to me because they do prophylactic BMX for women who have yet to be diagnosed. Why would they refuse someone who has already been diagnosed with DCIS? As far as the addition goes IMO its just another example of docs minimizing the risks of bc treatments. I originally was scheduled for a lumpectomy with inter operative radiation. After finding a second malignancy on the pre op MRI I decided to have a BMX. While seeing the MO after the surgery she mentioned it was really good that I had the BMX because people with autoimmune disease, which I have, don't do well with radiation! Well guess what? Nobody mentioned that to me before. so IMO you should go with your gut and find a doctor that will respect your wishes. I also agree that a BMX is much less invasive than radiation and 10 years on an anti hormone drug. Good luck and keep us posted....

I had bilateral mx in July 2014 for extensive dcis in left, and also 2 areas of dcis in the right. So I didn't have to fight for my bmx. Dcis is real cancer, just contained inside the ducts and non invasive. But no one seems to know when it becomes idc. Anyway, I would have done anything to avoid radiation...so be persistent and it will pay off. It took me 6 weeks of calling my gyne to just get a rx for my ultrasound. I felt that I had a serious breast problem, but all my mammograms were "normal". Btw, I had fibrocystic dense breasts. Seems like we shouldn't have to fight this hard, but do it for yourself. I also had to wait 2 weeks just to schedule the mri, one week just to get authorization. Doesn't make sense.

1.1 cm Something like that was seen on the MRI in late October but looked at again w ultrasound and deemed inconclusive. In Nov I had an excisional biopsy for a bleeding nipple and it was wire guided. It found Alh and Adh. Thank goodness for bleeding nipples. BUT - I already had an excisional biopsy in 2009 for the same bleeding nipple and nothing changed and it kept going for another two years. In that time I had a second and third opinion. The second guy said you've done all you can I wouldn't worry about it.

At my first onco appointment he ordered a bone scan and ct scan because he said "with your luck . . ." Thankfully those were clear.

So yeah, I'd have to say I'm a proponent of being one's best advocate.

FarmerLucy, thank you. I'll push them to be thorough with next imaging. My Onc directed me to ask my questions to the BS and RO as they are breast specialists. Then why the heck is she on the breast team and why do I need her

That's an idea, I know how to get ahold of them. My report says it's "probable" that the IDC is gone with the neoadjuvant therapy - letrozole. And the Bs said well it's not on the right side of my breast maybe it's on the left. Gee thanks I'm thinking.

My side effects have been eye dryness and ear ringing, it never is going away. I still have degenerative arthritis.

Stick to your guns it is your chose not to do radiation.

you know when I was in my 20s and 30s I felt bullied by doctors. When I was diagnosed with breast cancer I found this site to be way more informative than any of my doctors. I made it very clear who was in charge, ME. I have decided 4 years of AI drugs are enough. I want to feel good again if the cancer comes back I'll deal with it then.

OKBecca and JSorrow, I am in medicine and this story makes me so mad. For someone who is in good health at the time of the surgery, a bilateral mastectomy is not a high risk surgery. It just ticks me off to no end that doctors want to dictate what we do based on their beliefs, when they don't even see how much of that belief is rooted in the culture of how we view women's breasts here (I'm assuming you are in the US).

I myself have had bilateral mastectomy, radiation, and chemo, and am on anastrozole (Arimidex). Other than being flat, I have no lingering effects from the mastectomy. The other 3? Well, yeah, a lot. My cancer was different than yours and my baseline medical problems different, so I'd do those treatments again, but I'm not an anomaly. If you look at research about complications of mastectomy, it turns out they're very low. Other than having no breasts. Reconstruction, different story, but reconstruction is not the same thing as mastectomy. On the other hand, radiation and chemo do have the potential for longterm side effects but for ages nobody cared to research it. I really believe those specialists (especially rad oncs) are in intellectual silos and not only have no clue, but they aren't willing to admit to themselves they have no clue. I don't think what you are requesting is crazy.

For dealing with bully docs, I mostly recommend firing them. Find another. If you are in the room with somebody who is being a bully, just speak firmly and calmly, and remember that - unless you are in a life-threatening crisis and cannot consent - they cannot do anything to you without your consent (that would be the crime of assault). Don't let docs in other specialties speak to you about what surgeons will and will not do. It's kind of a cardinal sin in medicine to speak for another specialty - just remind them that you are sure surgeons are capable of thinking for themselves and making their own decisions. If you are able to do it (depends on how you react to being in an exam room), try to arm yourself with medical research, which should be from medline/Pubmed, not summaries of medical research in the popular press. If you don't know how or don't know someone who can navigate medline, then leave that part out. And - this is a big one, one that's hard, and one that sucks - don't get emotional. There are a lot of docs out there with stunted emotional skills who will be unable to deal with that in a grown-up way and will instead judge you negatively.

If you find a surgeon, your challenge will be finding someone who can follow you as a medical oncologist would after chemo is done - just doing exams and blood tests from time to time as surveillance for recurrence. I don't know what to tell you other than to think of it as interviewing someone for a job. I'm sure you will find someone who will work with you - you just need the emotional stamina, patience, and, unfortunately, money or good insurance, to get you through these visits.

The horrible situation where I fear for people is if your insurance will not allow you to seek out a different doctor. Mine has been great, and I don't work with insurance in my professional life, so I really don't know what to suggest if that's the situation.

Doctors do have the right to refuse to provide treatments that they do not believe are medically indicated, but they don't have the right to force you to accept the ones they do want to do. They just don't.