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Just diagnosed. Surgeon choices?

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sarahmaude
sarahmaude Member Posts: 338
edited May 2022 in Just Diagnosed

Hi, I'm SarahMaude. I'm still a little shocked to be here. No one under the age in my family tree has had any cancer before age 70. I'm feeling a little of everything.

On Tuesday this week when they told me my ultrasound following my mammogram had cancer indications that led to ordering an ultrasound guided biopsy the same day, they took my history. In doing so, they asked if I had a choice of surgeon. I looked at them blankly. If I broke my arm, yes. For breast cancer, no. The intake person said, "well, maybe your family doctor will have a recommendation."

On Thursday I received the call with my diagnosis. At that moment I was oddly calm. They said that my family doctor recommended someone (Dr. Y) and let me know I had an appointment for an MRI next week with an appointment at the surgeon the following day.

I started reading about the surgeon. I'm not normally swayed much by physician reviews, but there were several stating that this surgeon was blunt to the point of being unkind. I'm a direct person, and normally not that sensitive, but when I'm stressed, I do become more so. Right now, I'm stressed. I also noticed that he was a general surgeon who also did gallbladder, hernia, and lots of other thoracic surgeries. He didn't have any specific oncology or breast health credentials.

In my reading, I also found out that we have a small group of doctors who are breast surgical oncologists. There is one young woman (Dr. X) who joined the practice (12 years out of med school) who just moved to my city that completed a fellowship in breast surgery oncology. I read positive statements about how she was very considerate of patients as whole people. I feel that is very important to me.

After talking to my family doctor, who is very kind, he ended up agreeing to switch my surgeon referral to the younger female. One statement he made was that, "Dr. Y has certainly done more breast surgeries than Dr. X." But, he also said that if I had concerns, he believed they were valid and that I shouldn't be uncomfortable with my surgeon.

Now I'm feeling a little odd about pushing back on someone I've never met. I would say that I had full confidence in my family doctor's referrals, as most are great. But he did send me to a gastroenterologist years ago that ended up being one of the most unpleasant experiences ever (colonoscopy...they shouted at me because I couldn't do a urine sample for a pregnancy test because I was only 2 years post-menopause and not 3), plus I was left alone and freezing for a long time before my procedure.

My question is whether my asking for a 37 year old breast surgical oncologist over a 55 year old general surgeon a reasonable choice? What does anyone else know about types of surgeons for breast cancer? What about getting more than one opinion? Any other thoughts about my situation regarding the surgeon choice?


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  • moth
    moth Member Posts: 3,293
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    If you can get quick appointments, I'd probably go for consultations with both.

    Do have a read through this section https://www.breastcancer.org/treatment/surgery & then you'll be well prepared for what they say & what questions to ask.

    Sorry you find yourself here but it's a great place for support & info. Hang in there

  • sarahmaude
    sarahmaude Member Posts: 338
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    Thank you Moth!

    I’ve read all the links you referenced. I cannot find much about choosing a surgeon. I do think I’ll ask to have both appointments. Of course now it’s the weekend, so I have to wait until Monday and hope they haven’t already cancelled my first appointment.


  • betrayal
    betrayal Member Posts: 2,195
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    The suggestion to do quick consults with both is a good one if possible. My personal experience was I was referred to a GS who also did breast surgery and I wish I had had the option of knowing about a surgical oncologist and the opportunity to have an appointment with one. Just because a surgeon has X number of years experience doesn't necessarily translate into being a better surgeon and since this one received a lot of negative comments believe the old adage that "people tell you about themselves" so see if you feel comfortable with the one recommended by your FD. Given my druthers I would opt for the surgical oncologist who will also be focused on the aesthetics of the surgery as well as the outcome. This surgeon will be schooled in the latest techniques for breast surgery. My BS (older and with "experience") was not and I regret to this day that I did not get a second opinion and that no one suggested it.

  • threetree
    threetree Member Posts: 1,347
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    To my knowledge, there is no such think as a board certification in breast surgery, although I could easily be wrong. It is my understanding that all of the surgeons who do breast cancer surgery are board certified as "general surgeons". I think the difference comes with how much breast surgery they actually do. My surgeon was a general surgeon and I had some questions about that too, but he had been doing breast cancer surgeries for 30 years, and he also had a sister who had suffered from breast cancer, so was very dedicated to the cause. Also, this surgeon was the one that all the staff at the hospital went to and the one they all referred their own family and friends to. He was also on all of the local lists of "best surgeons", etc., so I had no problem whatsoever going with him.

    At one point an issue did come up and the oncologist questioned something that he had done (or not done in this case). She had attended a meeting with much younger surgeons who said they would have done the node checking a bit differently. Well, the oncologist went with their opinion, telling me that they do breast surgeries all day long, every day, so they should know best. The staff at the hospital all told me there was no question which doctor they would presume had the right idea, and it was my surgeon of course. I believe that these other surgeons, who worked at the local cancer center doing breast surgeries full time, were all certified as "general surgeons". They just focused singularly on breast surgery. On the other hand, my surgeon also did hernias and gall bladders, etc., but had years of experience on the others and a great overall reputation. I have no regrets whatsoever having gone with him.

    My surgeon happened to be a very caring and kind man too, and in your case it does sound like there could be a personality issue with the more experienced surgeon, and that is not something to ignore. It's a hard call and I totally understand the rock and hard place that you are between. I wish I could give you a definitive opinion, but I would suggest like Moth, to talk to both of them. Then listen to your gut.

  • ratherbesailing
    ratherbesailing Member Posts: 118
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    Don't feel bad about wanting a choice in doctors, and I agree with what everyone says about meeting both.

    It sounds as though Dr. Y is a general surgeon? One thing you might think about and/or ask them about is awareness of breast cancer studies and how their knowledge might impact decisions made. You will have a medical oncologist and possibly a radiation oncologist who will take over much of your care - do they have BC specialists in those fields they work with? If they do a lumpectomy and there are residual dirty margins, when would they go back in? There are standards for such things - you want to make certain they are aware of them and follow them.

    So sorry you're going through this. But happy to hear you are so clear-headed about it. Wishing you all the best

  • sarahmaude
    sarahmaude Member Posts: 338
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    Thank you ThreeTree!

    You are correct, from my reading, they are all General Surgeons. I guess I just started seeing BSO and thought that I should see a Breast Surgeon Oncologist. When I saw that the doc I’d been scheduled to see was only 1/3 of those “titles” I started worrying. And some of the personality comments I read were/are concerning to me. Of course, only the disgruntled seem to write reviews and in the length of the older guy’s career, he’s had more chances to offend patients rightly or wrongly

    Sigh. Part of me just wants someone to make all the best decisions for me, and other parts feel the need to controeverything I can. Trying to balance is hard!

  • moth
    moth Member Posts: 3,293
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    There are both surgical oncology fellowships, and even more specialized breast surgical oncology fellowships. https://www.surgonc.org/fellows/breast-surgical-on...

  • sarahmaude
    sarahmaude Member Posts: 338
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    Thank you Betrayal,


    I do really want a surgeon to be a partner in my journey. I don’t want to feel steamrolled or dismissed. I’m really wanting to see both doctors now. I think that is the most empowering choice for me.

  • sarahmaude
    sarahmaude Member Posts: 338
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    Moth,


    Dr. X did the very specialized Breast Surgical Oncology fellowship. She is in a Breast Health group of doctors at our largest area Hospital.

    Knowing that the BSO specialty really considers patients as more than just a diseased breast or tumor is important for me.

  • mountainmia
    mountainmia Member Posts: 857
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    I'm wondering if you've thought at all about type of surgery you want, and any follow-up surgery. What I'm saying is lumpectomy or mastectomy, if you have a choice, and mastectomy with aesthetic flat closure or with a reconstruction to create a breast mound if you want to or need to go with that. Some of the follow-up for aesthetics would require a plastic surgeon. This all complicates things a lot, but also gives you things to consider with respect to the initial surgery and surgeon.

  • wondering44
    wondering44 Member Posts: 260
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    I first met with a breast surgical oncologist. He and I disagreed on what surgery to do from day one. He asked me if I considered a double mastectomy the same day I got diagnosed, and I had not considered a single mastectomy at that point. After a few days of back and forth, I eventually got him to agree to the nipple-sparing mastectomy after he had another surgeon look at my case. I then met with a general surgeon who had many years of experience doing breast surgeries. He listened to what I wanted from the beginning. He assured me he'd do the nipple-sparing but told me that he would do a mastectomy if he saw too much during surgery. We agreed on the sentinel node biopsy, but he told me he would take more LNs if needed. He explained that the nipple-sparing might not take, and I'd have to go back to have the remaining nipple and skin removed if it didn't heal properly. I ended up going with the doctor, who listened to my wants and concerns. The nipple-sparing came out without a hitch, but he did take a few extra LNs. I think it is up to you and what you need. If you can make both appointments, you get a choice in which doctor works best for you.

  • sarahmaude
    sarahmaude Member Posts: 338
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    MountainMia,

    I’ve thought a lot about what surgery I prefer. Not sure if I’ll get the choice of lumpectomy, but I am interested in breast conservation. I actually am in favor of radiation. I expect that I’ll need some work on my unaffected breast as I’m a kind of pendulous DD. I think I’m well prepared with those questions, but the MRI and surgical consult will help inform my decision.

    These are some of the reasons I really want the surgeon to relate well enough to me. I’m not looking for a friend, just someone who is on my team.

  • sarahmaude
    sarahmaude Member Posts: 338
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    wondering44,

    I’m so glad you shared your experience. It definitely reinforces my thoughts toward seeing both surgeons.

    I really don’t like the idea of a doctor who won’t collaborate. Of course we want the most effective treatment, and we know that the plan could change based on time of surgery. That doesn’t mean our automatic choice will be double Mx.

    Thank you for your answer.

  • salamandra
    salamandra Member Posts: 736
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    It was a recent study that found that women patients have better outcomes with female surgeons. There are excellent male doctors and I've had a couple. But I wouldn't ever take a man's recommendation of a male doctor with the same weight as a woman's. Men just get treated differently.

    I think there are potential advantages to a younger doctor as well, though of course the individual is more important than the age.

    Still, all of this to say that I think I would also have been uncomfortable with that first surgeon, and I would validate your pushback, and choosing the surgeon that you did.

  • alicebastable
    alicebastable Member Posts: 1,944
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    The breast center where I get my mammograms is also where I got the ultrasound and biopsy. They also have two surgeons with their offices in the same center. It's part of a local mid-sized hospital complex, and I was so pleased to have everything as a one-stop convenience. I never had to make any of my own appointments after that mammogram - they do it all for me. The oncologist is in another building there, and they schedule anything necessary for me too. I was (and still am) able to zombie my way through everything by just showing up when and where they tell me! Even when I needed a urological surgeon in the middle of the breast cancer, he was right across the hall from the oncologist's office and the nurse literally took me by the hand and walked me over there and explained to them what I needed.

    I think I've been spoiled.


  • LivinLife
    LivinLife Member Posts: 301
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    I was initially referred to a general surgeon. There is no breast surgeon for at least 1 1/2 drive in my area. I met with the GS the week of my diagnosis. He seemed to know the surgery he wanted to do. That appointment was the first I was even hearing about my pathology and saw the report for the first time. I came on this site and gathered a ton of information. I then scheduled telehealth appointments with a nationally certified breast care center 4 hours away - breast surgeon and medical oncologist the breast surgeon referred me to. The breast surgeon and I talked about option. I ended up going with the 4 hours away center. I may have been just fine going with the GS and I didn't have any issue with him per se. I just wanted a team who knows breast cancer and breast cancer treatment. I did not have invasion though they suspected I may have at that point. I would have undergone treatment locally if needed though under the care of the team 4 hours away.... I also had an aesthetic flat closure which I can almost guarantee would not have happened if the GS did the surgery. I didn't even know about such a thing and the actual breast surgeon never mentioned that as an option - I just woke up with it.... Great idea on getting a second opinion and then you can decide what's best for you and what you're most comfortable doing. Best to you!

  • melbo
    melbo Member Posts: 266
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    I had a general surgeon who specializes in breast cancer surgeries who worked with a plastic surgeon. I had a lumpectomy on the cancer side, which the general surgeon did, then the plastic surgeon came right behind him and did a reduction in the right side so the sizes would match, and did a bilateral lift to make sure they looked pretty good.

    I was comfortable with both of them and felt like they listened to me and heard what I wanted. I was lucky though because my case was very straightforward and the size of my breasts and placement of the tumors made the options easy

  • debal
    debal Member Posts: 600
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    Many breast surgeons work with preferred plastics teams. I knew which breast surgeon I wanted without a doubt. And I thought I knew which plastic surgeon. At my consult she said she was more than glad to go with who I chose but would I please at least consult with her preferred choice. I did and the consult went great so I switched. I wanted a team that worked together on a regular basis and I didn't want to shake that up.

    I agree that years of experience matters but so does how many breast cancer surgeries are under the surgeons belt. Given the choice I wanted a surgeon that does all breast all day, not 1-2 breasts in between a full day of gall bladders and hernias. Same with plastics if that's the chosen route. My first plastics choice mainly does face-lifts etc with a few breast surgeries in between. I'm glad my breast surgeon suggested the change and all went well

    Not everyone has quick access to as many options as I did and I felt fortunate. Agree to get a second or third opinion and feel comfortable with the whole team. This can take some time but in the majority of cases surgery is not emergent.

  • sarahmaude
    sarahmaude Member Posts: 338
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    Salamandra, I saw that same article, and seeing that I had the choice of a female surgeon gave me a spark of hope that I could have an improved outcome by choosing her. I also know that the younger doctor will be up on the latest research and best practices, finishing her subspecialty fellowship recently, but more than a year ago is also appealing. With 12 years experience, she is hardly a baby.

    AliceBabstable, I also like the close affiliation of the diagnostic and surgery practices. If nothing else, they should have good access to their EMR systems. I don’t believe my oncologists will be the same, but I know they work closely. The less administrative work I’m have to handle, the more I can focus on treatment and healing. Glad you pointed that aspect out!

    LivinLife, wow. I’m glad you had such a good option 4 hours away. It really sounds like the best choice for you. I’ll have to look up aesthetic flat closure. I hadn’t heard of that before.

    Melbo, It sounds like you had a great team. Being heard is really important. I think if the GS herehad a reputation for that, I’d be much more accepting of him.

    DebAL, I do want the BS to have a PS that have worked together. That’s part of the teamwork I need. That’s kind of funny that the PS you knew ended up being more of a facelift specialist. A bit like me knowing surgeons for shoulders and broken arms. Great at what they do, but not too relevant to breast cancer. I appreciate you saying what I was thinking. If this guy’s day is 15% breast surgeries, and 85% something else, I will feel less comfortable than with someone who specializes in BSO. l

  • reflection77
    reflection77 Member Posts: 3
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    I suggest getting a surgeon with specialty in breast surgery.

    A woman may be more comfortable choice. Reviews are important.. and the

    hospital's ratings are too. Also, think ahead. ie who would you go to if you

    need an oncologist and or a radiologist. Plan re your recovery... usually

    your hospital stay is brief. You may need help at home with drains,

    Try reading some current books on Breast Cancer.. one is

    Justget me through this!! / or Dr Elisha Port's book "the 21st

    Century Breas Cancer treatment book.. or Tha Mayo Cliniics cancer

    guide. Alot of material is out there. Don't rush,, get more than one opinion and

    do your own research re md. Ps make sure they accept your insurance,,, the

    MD and Hospital. All the best.

  • sarahmaude
    sarahmaude Member Posts: 338
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    Update post consults.

    TLDR: I met with both surgeons. I'm going with the younger female BSO over the older male general surgeon.

    Well, it's been a week. Again!

    So I saw Dr. Y first. I actually really enjoyed meeting. Because I'm used to crusty, tell-it-like-it-is engineers, his Camel-unfiltered personality didn't bother me as much as I thought it would. He started out handing me an informational booklet and a flyer, and as he was talking to me, he quickly recognized that I was an informed patient, and although he was a little over the top praising my intelligence, he spoke to me in terms that were in line with the knowledge I've gained through resources here and through other research. One funny statement is he said, "I see you have a binder."

    He said he'd recommend a lumpectomy, but as we are STILL waiting on my FISH results, whether I have surgery prior to Herceptin or go straight to surgery isn't certain. I also found out that in addition to the 3 cm tumor I also have a 1 cm multifocal tumor that they suspect to be a satellite tumor, but they want to biopsy it to confirm that it's not a triple negative or clearly HER2 positive tumor. So, that procedure is set for next week. At this point, the combined area involved is around 5 cm (there is non-cancerous separation between the tumors).

    If I had the round of Herceptin, the thought is that the tumors would shrink substantially, and the lumpectomy would be less invasive.

    If I'm HER2 negative and they go straight to surgery, I'm looking at a fair amount of void left, and Dr. Y made the statement that if I was unhappy with how I looked 6 months after surgery, I could have plastic surgery to address that.

    I did learn that if I wanted DIEP reconstruction in the event of a mastectomy, there is no one in our city that does them. I'd have to go to one of several other locations in the region.

    There were certainly aspects of Dr. Y I appreciated. I like that he met me while I was dressed prior to me donning the lovely paper gown. He freely admitted he wasn't a BSO specialist. He does around 50 breast surgeries annually. He does the tumor board approach, and they meet regularly to make plans. I'm glad he was supportive of breast conservation surgery. I think he's caring and even sensitive underneath his porcupine exterior, but his reputation for being excessively blunt is well earned. If he were my only option locally, I know that he would do a good enough job.

    Some minor annoyances at his practice: no one was wearing a mask, the walls were super thin with no white noise, so I could hear every word from the exam room next to me, and the waiting room had the weather channel on very loudly (better than one of the news stations, it was the volume, not the channel choice that was annoying).

    Today I met Dr. X. She was impressive. The impact of her specialization and fellowship training were apparent. The facts of the case are the same, and her next steps are very similar to Dr. Y. Still needing the results from the FISH test. She was frustrated that it's been 7 days with no answer. She is calling pathology to make sure the report isn't sitting on someone's desk. Her hunch is that it's going to be negative, but we still need the answer as she would also recommend the Herceptin biologic in advance of the surgery. Also, she concurs with the MRI guided biopsy, so I'll still be doing that next week. She heard my request for a one and done surgery, so has reached out to a PS for a plan to do a reduction on my right breast and work to match my left immediately following the lumpectomy. She's already reached out to a proton therapy consult for a facility that's about 70 miles away, and she's already contacted a MO for an appointment. Since she's a hospital system employee, the electronic medical record connectivity is very helpful to coordinate between tests, pathology, and other information.

    All my testing so far continues to show no signs of lymph node involvement, but I liked that she said she'd also do fine needle biopsies of a couple nodes during the procedure in addition to the sentinel node biopsy the first surgeon recommended. She said they almost never do lymph node dissections as they did years ago.

    I was ready to go to one of the research institutions that are each about 90 minutes away, but I really was happy with her willingness to craft a hybrid approach combining the single surgery event with BSO and PS, proton therapy, and a female oncologist.

    The Dr. X office visit experience was not perfect. She's in a multistory building and I have to park in a garage and use an elevator to get to their building. They provide tokens to exit, so that was great. I have no mobility issues, so I don't mind the walk. I waited in her waiting room for longer than I'd like, and I saw one staff member in the back was wearing her mask under her nose. I didn't get to meet Dr. X before I put on my gown, but their gowns were a pretty cranberry colored and fabric, so I didn't feel undressed. I waited for her in my gown a little longer than I'd like, but when she talked to me she was truly present and didn't make me feel rushed in any way.

    I'm sharing the positive and negative details above to show that I'm not looking for perfection. Excellence is really about meeting my needs as a patient and treating me as a person. Dr. X is a great choice for me, and I'm so glad that the reading (forums and community) I did here led me to her.

    I'm really grateful to all of you above for your input. Having both opinions really was helpful. It also helped me process what I really want, and the fact I can get the options I want without going to the big research institution is good. Now, if I end up going the route of a mastectomy, that could change, but as of now, I don't expect that.

  • threetree
    threetree Member Posts: 1,347
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    SarahMaude - So glad to hear that you got things sorted out and have been able to make a final decision! That is a huge help, I'm sure.

    Also, loved the "Camel-unfiltered" personality comment. I'd never heard that one before, but it is the perfect description for some.

    Hope you get those FISH results soon. Waiting is just the worst. Good luck with all that's ahead.

  • minustwo
    minustwo Member Posts: 13,116
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    Sounds like you've made an intelligent informed choice. Good luck.

  • sarahmaude
    sarahmaude Member Posts: 338
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    Well, my final decision wasn't so final. My Dr. X is referring me to the University of Alabama in Birmingham, a National Cancer Institute designated cancer center. It's less than 2 hours drive from my home, and I'm glad to be able to have this option. I didn't realize how much having a plan was important to me until I've lived these past 3 weeks jumping between lily pads looking for some firm ground. They will be able to provide me the best combination of removing the cancer and putting me back together in a way that satisfies me.

    My Dr. X is close to another female BSO there who trained at MD Anderson, and I'm back in my holding pattern waiting on my phone to ring with an appointment. I took the rest of the day off work yesterday to sulk a little, but I'm back to real life today.

    I've got other nice little challenges like the blood thinner I'm on (see my other post, When it rains) seems to be interfering with the antidepressant I've been taking since around 2005. It's one that is also incompatible with Tamoxifen, so I might as well change now. Yay. Oh, and my daughter's dog, who we saved from cancer 6 months ago blew out his ACL tendon. He's the cutest most expensive rescue we've ever had. He'll be needing surgery in the next few weeks.

    On the literal bright side, the sun is shining, and we're just about 3 weeks away from a burst of spring color here. My boss and colleagues have been so supportive and flexible, it makes me emotional knowing I'll be able to balance work and treatment as well as possible.

    My dad had, and died from, a blood cancer. When he was going through it, my mom and I would reassure each other with the fact that every day may not be beautiful, but there is beauty in every day. I'm working on remembering that, and I know it's true.

  • sarahmaude
    sarahmaude Member Posts: 338
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    Final update to this post. Turned out that UAB was backlogged on their DIEP procedures and that they were being very selective on who they added to the list. With my DVT in my arm, I would not be accepted due to the risk of a pulmonary embolism during the procedure. In response. My MO and BSO decided to start me on anastrozole to “freeze” the tumor while I spent a couple more weeks on Xarelto. Two weeks later, I returned to my local BSO, and she was ready to proceed with the lumpectomy just 6 days later.

    I had to stop the Xarelto for 3 days prior to surgery and do Lovenox self injections instead. I had my surgery a week and a half ago, and everything went really well. my BSO took extra wide margins so I wouldn’t have to have another surgery with my clotting situation. She took one node. You can see details in the March 2022 Surgery post.

    Dr. X succeeded in getting totally negative margins, and my sentinel node was also negative. Even though she took a lot of tissue, she was able to use oncoplastic techniques to shift my remaining tissue around and use glue to bind the tissues. I have no divot. The incision encircled my nipple, and I’m amazed at how normal I look. My wishes were to look symmetrical in a bra and to not look like Frankenstein when I take a shower. Once all the purple glue is out of my skin, I think I will be able safely say she farexceeded my wishes.

    Bottom line, I was served very well by choosing Dr. X. The other Dr. was not trained to provide the same results as the BSO. Also, she referred me to an MO that both works very well with her, and who has taken good care of me during this longer than expect waiting stage.


  • katg
    katg Member Posts: 209
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    I wanted to add my experience. I went to my friends doctor's office 1st and got her PA. Christine Dizon- She suggested i go to a surgeon to remove the tumor and recommended a close one and a 2nd at the city of hope. I went to my insurance and found a dr named Ami Polvirini. She was a breast surgeon. Her specialty is breast surgery. She has privileges at City of Hope. I felt blessed. She recommend Dr. Patel the medical oncologist. From there Dr. Lee was recommended for the gyno surgery. Next was the plastic surgeon i needed for my mastectomy reconstruction.

    Because that PA gave me the recommendation to go to the City of Hope, i went there. Otherwise, I may have gone to my local hospital. Would i have had the same care? I do not know. I do know that i had 4 Doctors all in their specialties. I got them because i live in Southern California. Many good doctors.

  • katg
    katg Member Posts: 209
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    sarahmaude.


    GREAT NEWS! We know have such great specialists. My friend is still being treated at MD Anderson and speaks of the great work. The treatments tat have kept her going past the time she was given with stage 4. She choose a mastectomy no reconstruction. I wanted to add to my post above that i was supposed to have radiation, but it was not necessary, so i had an expander put in. My "foob" as some call it looks just like my other one. The nipple and all are gone, BRCA2 says cancer may have lingered there. I am getting the other one, cancer free it is, out in 2 months. I get to keep the nipple. But, a change!!! I noted my leg was swollen so forgetting to tell the plastic surgeon, I told the RN as i was checking out. She took a picture, could not get the doctor who was in another visit, so she called ETC, urgent care. She then said this could be a clot.

    So off i went for a leg ultrasound and listening to the two who did it, I knew something was in the part above the knee. Turns out i have a clot and am now on those shots of blood thinners. Twice a day. The interesting thing is i almost said nothing. Instead I was taken in and treated with the utmost care. I cannot get a pharmacy who has any in stock, so the doctor says come here morning and night till we get some for home. Yesterday the nurse said i need to go in the morning and ask CVS to check all their CVS's. I woke up and almost did that. Then I remembered in my portal the doctor said come to COH until we can get you the meds at home. The nurse did not follow that. I second guessed her. Called the triage nurse this morning and she said she should not have said this and to come in. Not sure how long it may take, and my surgery may be postponed. My plastics doctor said do not worry. Your health is important. Most important.

    Advocate. We advocate for ourselves. 2nd opinions. Without a doubt, it is our body. A women's body is precious. Let the Doctor who knows it and wants the best outcome for it, work on it. Thank you all for your experience.

  • sarahmaude
    sarahmaude Member Posts: 338
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    Katg, wow! I’m so glad you remembered to say something. Blood clots are really dangerous. The self injections, not the shot itself, but the drug, we’re hard on me. I felt irritable and a bit jittery. I like my Xarelto a lot more. The good thing about Xarelto is that it clears your system in 3 days, so that was how I was able to have my surgery by stopping it and switching to the Lovenox while I was off. Ask your MO for how she recommends treating the clots over the six months. I see you are on letrozole, not tamoxifen, which is good. I cannot do tamoxifen due to clotting risk. Since your other breast is currently healthy, they shouldn’t have to push you too fast. Clear that clot (I think protocol is 6 months on anti clot meds for a first clot), and then resume regularly scheduled special programming.

    Yes. Always advocate. That is so important. Even the best doctors aren’t mind readers, and we are all human. It takes all of us.

  • cheftoast
    cheftoast Member Posts: 24
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    sarahmaude, I am so glad you made the right choice for you! Having a BSO is world of difference over a GS who does some breast surgeries. As my BSO said, "this is all I do, day in and day out." Having said that, the whole package matters. I went to a large, important cancer center for a second opinion and the surgeon there was not just blunt, but arrogant and wouldn't answer my questions. She just kept blinking at me and saying "my patients are very satisfied." She may have been an excellent surgeon, but I looked ahead at the possibility of complications and other emotionally wrenching situations. Did I want a surgeon who saw me as a thing on which to prove mastery? An inconvenience? No!

    Even knowing that, it took me a whole weekend to sort my feelings because I was wowed by Major Cancer Center. Ultimately, I went with my local hospital and a kick*ss BSO who really listened and gave me data to back up her answers. She did an awesome job and the team-based model at my hospital means I've gotten really comprehensive care. Highly, highly recommend doing your research AND listening to your gut. Cancer makes us all so vulnerable and good communication is critical to our healing. Well done!

  • sarahmaude
    sarahmaude Member Posts: 338
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    cheftoast, Thanks for sharing your experience. I've been to world class teaching and research institutions for some other family members' non BC medical situations, and I've also come across one or two providers who saw my family member as more of a case than a person. I think for all of us, providers need to retain a focus on the person, but some researchers definitely seem detached from that. Having the whole package is really what a BSO is supposed to be. I looked at the curriculum for a couple of the fellowship programs, and it's clear that surgical skill is only one component. Interaction, support, and finding the right solution for each patient is extra important for BC. There are a lot of options, and many lead to a similar survival outcome. That's why the BSO surgeon, who usually kicks off our treatment, must have solid communication skills to help us arrive at the plan that works best for each situation.

    My BSO is the only one in our area, and there are many at two hospitals within about 100 miles in two directions from here. My BSO mentioned that one of the larger hospitals recently referred a local patient back to her for her surgery. Word will get out, but it will take some time. Having BSO skills in communities should be a top priority, and getting the word out about the difference between their abilities vs. a GS is an important message, and as you said, provides a world of difference.