Had a surgeon... lost a surgeon
I was recently diagnosed with early stage breast cancer. I am part of a high risk breast cancer program as my sister and father both had breast cancer. I get a yearly mammogram and MRI as a result of being in this program.
My sister died at 61 from breast cancer that spread to her bones and my dad had breast cancer in his 30's but died from pancreatic cancer at 61. I just turned 60 in March. A few days before my birthday I had an MRI. I was told my doctor would get the results in 7 days. Thirty-six hours later, however, I got a call from the hospital saying that my MRI showed a "suspicious" mass. I was asked to go in for a follow up ultrasound. A few days after the ultrasound I got a call from a surgeon's office saying that I had an appointment. I had no idea what the test results displayed but was extremely upset that in a matter of days I was already seeing a surgeon. My mind was jumping to worst case scenarios.
I had a consultation with the surgeon who was so kind and answered all my questions. He said by the looks of things that there was an 80 percent chance that the mass was cancerous but that we wouldn't know until after the biopsy. I told him that I would want to do a double mastectomy with reconstruction if it turned out to be malignant. He was very supportive of that decision and said he would refer me to an excellent plastic surgeon if necessary.
A week later I got the results that the mass was indeed cancerous. I was sent to a plastic surgeon and had a consultation about the process of reconstruction. This surgeon was extremely kind as well. I felt like I was in excellent hands for both procedures that would take place in the operating room simultaneously. I left the appointment feeling so relieved that I had lucked out with two amazing surgeons. All they had to do was find a common time in the operating room in which they could do their work in tandem.
I received a call from the first surgeon on Friday that he had no room in his schedule to do the surgery in the next 6 weeks. He wants me to have the surgery sooner than that for obvious reasons. He had been hoping to jump into one of the plastic surgeon's time slots where they could work co-operatively. Unfortunately, the plastic surgeon has had all his time slots removed due to Covid. He had assumed he could jump in on the first surgeon's time slot.
My surgeon told me that he has now referred me to a surgeon at Princess Margaret. I was devastated that these 2 surgeons who had made me feel so at ease could no longer help me out. I have no idea if the new surgeon will take me on or if her time is booked for the next 6 weeks as well.
When I heard this news on Friday I was devastated. I know scheduling is beyond the surgeon's control, but I felt abandoned none the less. I realize that this is not a personal thing, but I'm sure you all understand the sentiment.
I haven't heard from the new surgeon's office yet but I pray she will take me on. I know PM is one of the best hospitals out there for treating cancer. Maybe all of this will end up ok but the waiting is so difficult.
To those of you administering this site, thank you so very much for offering a place for us to share our stories and interact with a community who understands exactly what we are going through.
To those of you recently diagnosed, or those of you who have navigated this journey for years, I wish you all the best.
Comments
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Winnie, I think that the challenge with facility space and surgeons’ time is a real issue. My BSO was recommending I go to UAB in Birmingham, AL as my city has limited advanced oncoplastic surgeons. They told her they were 2 months behind on the DIEP procedure I was considering and that they were being very selective on who they scheduled, and I was not going to be a candidate due to a recent DVT in my arm (from my breast MRI).
I ended up pausing surgery plans for a couple of weeks, and my local surgeon reconsidered, and I just had an oncoplastic lumpectomy. I know scheduling was challenging here. She originally wanted to do it on 4/11, but that wasn’t available. I ended up doing it with 6 days notice on 3/31, because that was an open slot for whatever reason.
I know that scheduling 2 surgeons for a longer procedure has to be even trickier. I think your original surgeon is doing you a favor by referring you to somewhere he trusts that may have better scheduling. If you are like me, the lack of a plan is nerve wracking.
And who knows, your original surgeon could end up with the space and time. You are in that searching and planning phase. To me that has been the worst. The surgeon you trust is making a referral. He is transferring you to someone he trusts. To me, that keeps the treatment plan in a circle of trust, and I expect that the referral will serve you well.
I’ll be thinking about you. I can say that 3 days post surgery, I’m feeling the most settled since my surprising diagnosis. Unlike you, there is zero history of BC in much family. I’m first person under the age of 70 in my family tree with any cancer. (I’m 57).
I will say, that the bright, well informed women I’ve met on this board have been truly magnificent in helping me navigate my whirlwind of choices and circumstances over the past week. We are here for you, and while I know you wish you weren’t “here” I’m glad to meet you, and want to support you in your journey.
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Dear Sarah,
Thank you so very much for your reply. I very much appreciate your understanding of the situation. I am so happy to hear that you are the most settled since your surgery. You are exactly right that not having a plan right now is what I find most nerve wracking! To me, knowledge is power, and that lack of knowledge at this time is extremely hard. I don't know if this new surgeon will take me on, but if she does, I know my nerves will settle completely.
I am so glad that you were able to get surgery with only 6 days' notice. That is incredible! I wish you all the best in your recovery. I can't thank you enough for responding to me. Knowing that you understand is so helpful. I am so happy to "meet" you as well.
Sending you so much healing energy and huge virtual hugs.
Winnie
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Winnie,
i understand your real frustration. i am at the City of Hope in Duarte California. I agree about your 2 surgeons' referral. They only send patients to those they trust. I agree that contacting them is good. I feel like your current doctors may help with this referral. Look up those doctors online! I know at the COH, i checked out the credentials of all mine. I was amazed at who was caring for me. Amazed .
My chemo shrunk my 5cc tumor by half, but after 12 rounds of Taxol/C combination chemo's and 1 Red Devil, I was hospitalized and chemo was off the table. He sinks my blood numbers to super low levels. I took a target pill next for 27 days and my blood did the same thing. Because of the size of my tumor, my original late March or later mastectomy was moved to Feb 9th. They had put it the third week of January, but i was barely over covid and i said no way!!! I got a call the same day from the breast surgeon and she spoke with the plastic surgeon and the gyno surgeon and all three choose that date on Feb 9th. I figured 3 weeks was good. I THANKED GOD. Surgical suites are as was mentioned not easy to get and getting all 3 doctors could do it.
I know you are worried. I was diagnosed with the genetics test at COH and have BRCA2. Likely my Mom. Mom had breast cancer when she died at 86. She did not take treatment. Chronic lymphoma and a spot in her lungs too. She never told us. We found out after. You are being proactive. Your first surgeons are in your care plan. This new one with Gods grace will have an opening sooner. A door has opened. You will get the care you need.
I am the middle of 5 kids, after i got my diagnosis, my younger sister was tested, as was her daughter. Both carry BRCA2. My older brother just got tested. Not sure for him. In today's world, genetics offer us hope to treat, treat, treat with therapies so we can live.
Keep us posted! Take this one day at a time.
Katg
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Dear Katg,
Thank you so very much for taking the time to reply and offer such encouraging words of hope.
You have been through so much and I respect everything you are doing to be proactive. Raising 5 kids is so rewarding but trying to do so while battling cancer must feel overwhelming. I'm so glad that your 3 surgeons were able to find the date of Feb 9th to co-ordinate your surgery. I wish you such amazing healing energy to get through the recovery process.
I can't tell you how much I appreciate you and Sarah responding with such positivity. You have both made me look at this situation differently in that maybe this will lead to a much better outcome. I have looked up the new surgeon's credentials and reviews and they are excellent. I pray that she will take me on.
I applaud that you went for the genetic testing. I'm sorry that you, your sister and her daughter tested for the BRACA2 gene. I truly believe that knowledge is power though and it sounds like you are all being so proactive.
I wish you all the best moving forward. Being included in such a positive way in this community has helped so much. Again I thank you so very much for taking the time to respond so warmly.
All the best to you and your family!
Winnie
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