Recently Diagnosed DCIS A a Few Questions - Dallas TX
Hello all. I am in Dallas TX and just found this site and have a few questions before consult with first surgeon tomorrow morning.
Had my annual mammogram about a month ago and it showed calcifications in left breast that were not there the prior year. Was told by imaging facility that I needed a biopsy.
I had a stereotactic biopsy about 10 days ago and was told I have stage 0 DCIS but high grade.
I am 62 but when I was 19, 20 & 42 I had 3 benign fibroid adenomas removed via surgery (I guess lumpectomy) so have been having mammograms and annual checks for 40 years but the doctors are no longer around.
First question: has someone posted a comprehensive list of what questions to ask on your first appointment? I am overwhelmed and trying to make a list but afraid I will forget something. Want to cover it all while I can. Also can you ask doctor if you can record?
Second question: are members allowed to post names of doctors and oncologists in this forum by name as I plan to get 2 or even 3 opinions before I make any final decisions.
In particular are there doctors in Dallas who specialize in DCIS and lumpectomy surgery which is what I am hoping I will be able to do.
The Doctors/facilities that are loved or aren't. Environment matters to me. I need clean and bright and light. Brilliant but caring and innovative.
Third question: if I have to do radiation, does anyone in Dallas do the shorter or pellet treatment if you qualify?
Fourth question: I found that you can get 2nd opinions from Dana Farber, Duke, Johns Hopkins, etc remotely - anyone do that and feel there was value.
Fifth question: what if any complimentary alternative treatments has anyone used that they have found effective?
Sixth question: has anyone who had stereotactic biopsy had any odd sensation in that breast that lingers? Hard to describe.
Seventh question: what is the timeline for DCIS in terms of how quickly you need to take action? Since it's already mid-November I would like to wait until January to do anything. Get through a normal holiday season, let my staff take their vacation time, be sure of getting the A team at hospital, etc.
I am married, no children, 2 dogs including a 5 month old puppy, executive with a high pressure career that I love, remote caregiver of 86 year old mom, Jewish, only BC I can track going back to great grandparents, their children, grandchildren and great grandchildren is one aunt (fathers sister) who had mastectomy in 1980 when she was in early 60's but her daughter said she never had any follow-up treatment or chemo or meds and lived another 25 years and died of heart issues.
Lots of longevity in my family except my father who died at 57 from embolism and only other cancer was maternal grandmother who died of multiple myeloma at 86.
I am definitely overweight and sedentary so consider those risk factors for me. I never took HRT and went through menopause 10+ years ago.
I have fibromyalgia (managed well these days with only occasional flares), high blood pressure (meds), cholesterol managed by meds, cervical spinal stenosis found via MRI but no day to day issues, hypothyroid managed by meds but otherwise healthy besides requisite aches and pains.
I eat healthy, rarely drink, have lymphatic/therapeutic massage monthly, don't get enough sleep, am Type A control freak with a touch of OCD but very active and involved professionally and socially. Determined to stay positive and get through this and move forward.
I knew day of mammogram something was wrong when they had me go back 3 times for additional films so have made my crazy since then. Researched like mad first week but them stopped because it's almost too much. Now realizing I have to be at surgeon at 8 tomorrow and I feel ill prepared.
Also I am still having a hard time saying the words "cancer" and "malignant". My internist said you have "pre-cancer" but doesn't everyone? How did everyone get past this?
Thanks in advance. This is an amazing website and group of forums and members.
Comments
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Hi Balthus. You are lucky to be at UTSW because they are an NCI Designated Cancer Center and world-class.
Dr. Michael Lagios is one idea for a second opinion and recommendations on treatment for DCIS. He is highly respected and your information can be sent to him. Here is a link:
http://www.breastcancerconsultdr.com/about_dr_lagi...
As far as complimentary recommendations, the one sure recommendation is maintaining an appropriate body weight and regular exercise. Controlling your blood glucose level is also helpful.
There is no rush on making decisions on DCIS. I think the docs at UTSW would concur with that
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Thanks Melissa. I was terrified of the biopsy but my radiologist and tech at UTSW were wonderful.
I went to UTSW for about 15 years and Dr. Peters removed the last fibroadenoma I had 20 years ago. Dr. Peters was an angel.
I continued to go to UTSW annually for screenings until about 5 years ago when (since everything had been fine for so long) I moved to an imaging facility and BC Doctor closer to my office as I felt I was taking the spot of someone who needed to be at UTSW more than I did and it was more convenient.
I will say that I had the most horrible experience with the facility and radiologist where I have been going the past 5 years on the day of my recent mammogram and there was no way I was having my biopsy done there and by that radiologist or will ever go back.
I was recommended to a radiologist in Richardson and also called UTSW and UTSW got back to me first. The other radiologist office to this day never returned my call to schedule an appointment.
I was thinking that the best choices are UTSW or Baylor in Dallas but know there are many surgeons and oncologists at each one
Yes I know you are right about weight and I need to get serious about exercise as I need to lose 30-40 pounds and diet alone won't do it.
Thank you for the info on Dr. Lagios. I will look into him.
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I had a horrid experience at Baylor including a gross misdiagnosis, but for some unusual reasons. I also feel my care there was not optimal. I did, however, like the gyn onc I met there and would see him at Texas Oncology if I had the opportunity.
My favorite UTSW breast surgeon retired, but I liked the last woman I saw recently a lot. I'll dig for her name and PM you if you eant it. I have had more gyn onc experience than breast onc at UTSW. I adored my genetics doc at UTSW
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Hi Balthus,
So sorry you have joined us but you will find tremendous support here.
I'm five years post my initial DCIS diagnosis. What I can tell you from your work perspective since you are an executive if you decide to have a lumpectomy followed by radiation which may be the standard course still for DCIS, you can have that surgery on a Friday and be back to work on a Monday and not miss a beat you can continue to work while you have your radiation treatments also I know it all seem so scary and daunting now but this is doable. No one at work has to know!
I did go get a second opinion at Duke, but it didn't change my plan I was more interested in whether I should have a double mastectomy given my family history. All physicians including Duke talked me out of it and suggested lumpectomy to be followed by radiation About the only other item that it confirmed for me -the location of my tumor was such that I could lay stomach down on the table for radiation and have the beams shot through a different way which lesson their impact on the rest of my body - this may or may not be helpful to you
As you can see by my summary at the bottom I'm facing my third diagnosis but don't want to scare you!!! I think my situation is very very uncommon. With DCIS you may be able to have surgery and just move on past it and get on with your life I know it's very scary at this point in time - feel free to PM me I'll try to keep an eye out for you.
Best of luck to you
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Thanks so much. Appreciate you looking out for me. I have been blessed with a wonderful husband, great friends, a =n understanding boss and good insurance. I am not telling my mom. She lives 1,000 miles away and is in assisted living and there is nothing she can do and I couldn't bear to worry her. She can't travel and my concern is not being able to make my 6 weeks visits to her for a bit so I am also trying to get one in December as I saw here a week before my world got rocked.
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Dr. Michael Grant at Baylor is an excellent breast surgeon and would be great for a second opinion for you. He is very caring and compassionate, and in my five years of breast cancer experience across three facilities in Dallas, is without a doubt the doctor who cared the most and provided the best care, IMO.
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Thank you for the info on Dr. Grant. I will add to my list.
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Also, there is yet another option for rads if offered there. I had Partial Breast Radiation and had it twice a day for five days and then I was done. I also worked all five days. I had first treatment at 7:30am, was in work by 8 and worked until 1:00 and had second treatment at 1:30PM. Then I went home for the day.
There is also the "Canadian Protocol" ( I think that is the name of it) where you have everything done in less than 3 weeks? As for how fast you must go, January is fine. No hurry with DCIS. Take your time. I second Dr. Lagios for a second opinion. Best to you.
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Thank you.
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I started a new post after my first appointment today with BC surgeon. Dazed and confused. Thanks all.
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