Which doctor should I be seeing
I was dx with LCIS, ADH and Adonesis this past summer. I have my first 6 month follow up this December. I was basically told by my bs to what I had to go home and do some research on them so I understood them. I have done my research. I ask my bs who I should do my follow up's with and she stated it was up to me, she said I could do them with her, I elected to do this as my primary stated he does not know much about any of these (at least he was honest).
After doing all of my research I sent an email to my bs asking about tamoxifen and got a response from her nurse stating I would have to see oncology. I have Kaiser so I need a referral. Today I sent an email to my primary asking and he told me I did not need to do anything special just make sure I go to my follow ups.
I am really confused. The only reason I was dx with this is because I had a radial scar show on my mamo. Everything I have read states LCIS and ADH do not usually show on mamo's and do not usually have any other symptoms.
I would like to know what types of doctors any of you have seen and what have you done for follow ups and monitoring.
Comments
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I had BMX and chemo. I do all my follow ups with the medical oncologist. I would recommend that you be seen by a MO, who, in my experience, has the best overall view of treatment needs and appropriate follow up needs.
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You should consult an onc and almost certainly be taking tamoxifen unless you have a condition that contradicts tamoxifen. I am surprised they just sent you home and did not tell you what to do. You can be seen every 6 mos, alternating MRI and mammos. Either bs or onc can do physical exam.
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My BS is my go to dr for everything. Her office set up a consult with an onc to discuss tamox (I chose not to take it). Her office set up consult with PS (should I have PBM). After scheduled mammos and mri's, she's the one I talk with about results. She is amazing. There have been a few times I left a message for the nurse, and my BS called me back herself.
The first BS I had was a tool. No dr should tell you to do your own research (my tool dr did). My advice is to find a better BS. You should not have to do all this work yourself. It was an incredible difference once I switched from the tool dr to the amazing BS. It made all the difference in the world.
Good luck.
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I was diagnosed with LCIS 8 years ago. I took tamoxifen for 5 years, now take evista for further prevention, and continue with high risk surveillance of alternating mammos and MRIs every 6 months, breast exams on the opposite 6 months (once by oncologist and once by gyn), ( so essentially I'm followed every 3 months.) My oncologist coordinates my overall care; does bloodwork, monitors the meds, writes the scripts and orders the mammos/US/MRIs. An oncologist can also help figure out your overall risk and the pros and cons of preventative meds for your individual situation.
anne
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Thank you all for the tips. I am going to call over to my BS office today to make my appointment for December. I think I will try and talk to her during my appointment regarding a referral to an oncologist.
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Dgardner, if it's possible, see if you can get a 2nd opinion with a nicer BS. It just seems ridiculous to me that you'd have to beg for a referral to an oncologist. LCIS sucks, but you don't have to have a dr that sucks too. Forgive my crudeness, but BC isn't a polite disease. With LCIS, you are in charge of your choice of treatment. My oncologist told me all 3 choices have the same survival rate. But how can one make an informed decision without expert consult with the proper specialists?
Wait ... you were diagnosed strictly from a mammogram? Did you have a biopsy?
Waving hi to Anne!
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If you want to go the antihormonal route, then some places have you go to an oncologist, but other places make you go to a breast surgeon for these. (My 2nd opinion at an NCI-certified institution had their LCIS patients go to a breast surgeon for tamoxifen.)
Personally, I think a medical oncologist has much more knowledge about antihormonals than surgeons do. If you have a more complex medical problem, such as are at higher risk for emboli or arthritis (which can be a problem with some anti-hormonals), then your medical oncologist is, on average, understand more about your situation than a breast surgeon will.
Surgeons are trained to do surgery. Most of them like to do surgery, which is why they became surgeons. Obviously, if you want to explore PBMs with reconstruction, you need to consult with a plastic surgeon (at least eventually).
My new onc wants me to see me once a year, and have another doc (such as my primary care doc or gyn doc) do my 2nd clinical exam/year. So different docs like to do things differently. I absolutely cannot stand my breast surgeon, so I haven't seen her since 2006.
You don't have to make your decision before you see a doc. But if you know beforehand that you would definitely not want treatment X, then you don't have to explore that option with the appropriate doc.
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Cresent5 -- my mamo lite up the left breast on the outside so they did a core needle biopsy which then showed a radial scar, which then prompted for the lumpectomy, which then showed the LCIS and ADH.
I have done research on Tamoxifen and am not sure if I am I will be able to take it with some of my other medical conditions. I do not have any history of breast cancer on either side of the family, however ovarian and uterian cancers on both sides of the family.
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I think that an oncologist should be your main MD .Mine coordinated all my exams and kept track of my evolving family history. I see mine every 3-4 months and when I had LCIS she kept track of all exams and tests, still does . I saw my BS for a post-op visit and then maybe one more a few months later but that's about all.
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I finally got my first 6 month follow up appointment. I am following up with the BS on 12/5/11. Durning this appointment I am armed with a ton of questions thanks to all of you. I am also going to take in the research I have done which all suggests I should be see by an oncologist and will not be leaving the office until I get my pathology report.
I just wanted to say thank you to everyone here for helping me make some sense of this. I am still not real comfortable with not having control over LCIS, but knowing there is this group and support it makes dealing with montioring better.
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I have my 6 month follow up mammogram in a week. I am very nervous about this since I have noticed a small lump in the same breast that has the LCIS, ALH and ADH. Hoping that it is nothing but feeling like it is something.
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JanetM - My thoughts will be with you over the next week. I am hoping after my first 6 month follow up I will have some better answers as to what my options are. Have you started or are you thinking about taking Tamoxifen or exploring other options?
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