Today we had our second opinion appointment with a specialized breast surgeon at the University of Chicago Medical Center, Dr. J. We were very impressed with her.
While in the waiting room at the Breast Center, we had the opportunity to look at information about Dr. J’s background and qualifications. I was encouraged to see that her “clinical interests” include “rare tumors of the breast (including phyllodes tumors, which is my diagnosis, being specified).
Tomorrow we will meet with another specialized breast surgeon, Dr. K, at Advocate Christ Medical Center, which is technically our first opinion appointment. We have heard great things about her.
Dr. J essentially recommends a course of treatment that we were expecting, surgical excision, to remove what appears to be (after imaging and core tissue biopsy) a benign phyllodes tumor. The excision would include a margin (approx. 1 cm of tissue around the tumor), as it could recur/grow back, though unlikely.
If we opted not to have it removed in the near future, it would likely continue to grow. phyllodes tumors can be somewhat fast growing and can also turn malignant over time. So there is no doubt in my mind now, that surgery is the best option here.
We already know, from what I have been told by Advocate Breast Care Center staff, that Dr. K will recommend the same or a very similar treatment protocol.
Though typically Dr. J would recommend the surgery happen approximately two weeks from now, she doesn’t see a problem with waiting until we return from our cruise in mid-March. That way I can fully enjoy that trip, along with a another short one, between now and then, while not trying to fit in the surgery.
Dr. J said waiting a little over a month versus two weeks shouldn’t be an issue, but she wouldn’t want me to wait as long as six months. That was helpful to know.
Surgery with Dr. J would be outpatient and I would be there for 4 – 6 hours, with 1 – 2 hours of that being the actual surgery. I would not have anything to eat or drink after midnight the night before. I would have an IV and it would be local anesthesia with MAC (monitored anesthesia care), including mild sedatives delivered through my IV or she said there is the option for general LMA (laryngeal mask airway), as opposed to intubation.
I would likely be sore for a few days, and not be able to jump or bounce for about 2 weeks, which I am prepared for, though certainly don’t like not being able to do higher intensity exercise daily. After that, she emphasized being sure I wear good/supportive sports bras. I would have a post operative appointment with her 8-14 days later.
After the surgery to remove the tumor and final pathology comes back, there are four scenarios:
- It is determined to be a fibroadenoma, most common benign breast tumor.
- It is confirmed to be a benign phyllodes tumor.
- It is determined to be a borderline (between benign and malignant) phyllodes tumor.
- It is determined to be a malignant phyllodes tumor.
Scenarios #3 & #4 are highly unlikely, but not impossible. It helps me to have them on my radar, so if either were to be the case, I won’t be completely shocked. We talked briefly of how that would be treated and it might include radiation. However, it is something we will deal with if and when need to. Though I am human and certainly allow my mind to wander a bit in that direction. I intend to try not to spend much time worrying about that possibility.
For those who I am not connected with/don’t follow me on Facebook or missed any of my recent updates there, I shared on 1/29 that I did have a bilateral breast MRI and found out the following week (on 2/4) the results looked good, though I wasn’t given much detail initially.
The MRI showed that the small mass they were unable to pinpoint and biopsy on 1/15 was benign. Overall the bilateral breast MRI was a positive experience for me. Though I don’t love getting IVs put in my hand, that was probably the most traumatic part. Once the actual MRI began, I was fairly relaxed, and even drifted off to sleep a few times.
So my takeaways from today are that of relief, understanding what will likely happen going forward (wide excision surgery) and when (likely the week of March 21st or soon after). Though that is mostly what I expected going into our appointment, I still had many unanswered questions.
I am interested to see what our experience with Dr. K is tomorrow. I wonder how her bedside manner will compare to Dr. J, who I felt extremely comfortable with. I have a few friends who have been in Dr. K’s care many times and say wonderful things about her. So I imagine I will be very impressed with her too.
I guess it will come down to if I feel she is as knowledgeable as Dr. J specifically about phyllodes tumors. Since they are rare, “accounting for less than 1% of all breast tumors” (according to breastcancer.org), it is important to me to have a specialized breast surgeon who has significant experience with them.
Dr. J referenced two recent research studies that were published about phyllodes tumors and talked about a few of her more recent patients who have had phyllodes tumors.
Thank you for your continued support, kind words, positive thoughts, and prayers as we navigate this breast care scare, as I have come to refer to it.
I am doing my best to be brave and take things one step as a time.
That seems to be working for me, except for when it doesn’t.
In those moments, I try to be patient and give myself grace (as a good friend taught me).
I know it is natural to feel fear and anxiety about the unknown.
I will keep you posted via shorter Facebook updates on my personal timeline, as well as my blog and fitness pages there. And I also intend to post here again soon with what we decide and the next steps from there.
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