At odds with surgeon.

Bookpusher · July 2021

3 weeks ago was diagnosed with high grade DCIS, with comedo neucrosis, ER/PR negative. Met with surgeon yesterday. We disagreed on treatment. He recommended lumpectomy, with rads. I wanted mastectomy, (even double) I feel my reasons are valid. Surgeon was somewhat dismissive of my concerns re high recurrence rate of grade 3, comedo neucrosis, ER/PR negative status, I did not want rads, mother had breast cancer, I felt mastectomy would give me more peace of mind, etc etc. I am 70. He countered with his reasons for lumpectomy and added, I am a breast conserving surgeon. He did not flat out say he would not do mastectomy but the vibe was he wanted me to do lumpectomy.

THEN he drops the bomb that the radiologist there at the breast care center had reviewed my mammo from my home facility and found 3 new suspicious areas.

New mammo and ultrasound recommended, I agreed and they were done. Was then called back into 2nd consult with surgeon to be told they wanted to do 3 new biopsies. I asked why we couldn't just move forward with a mastectomy and spare me having to go through the 3 biopsies. He said the results of those biopsies would help determine if I needed a mastectomy and what TYPE of mastectomy he would do. He added if nothing of concern came of these 3 new suspicious areas, his recommendation would still be lumpectomy. He looked at me and said I know you want a mastectomy and if there is additional cancer that might be your only surgical choice. I reluctantly agreed to do the 3 biopsies. (Ouchie) I didn't and still don't understand why moving forward with a mastectomy would not have been the recommended approach . I could have skipped the torture of the biopsies and let final pathology determine what those areas of concern were and a treatment plan. I was in that biopsy room 3 1/2 hrs and have a golf ball size hematoma at biopsy site #2.

Do you think these add'l biopsies were needed to inform him of what type of mastectomy to do? He said there were more calcifications and evidence of architectural distortion in one area.

By the end of the day I was physically and emotionally spent and left wondering why he couldn't have just gone ahead and done a mastectomy. I also think convincing him to do a mastectomy might be a challenge, I can't imagine he'd ever agree to do a bilateral. I also wondered why he even bothered to hold a a discussion about treatment and then drop the bomb about more testing needed to be done. The whole approach seemed disjointed.Thoughts?

DebAL · July 2021

bookpusher, without a doubt go for a second opinion. Did you get am MRI? I'd have a real hard time with a surgeon like that operating on me to be honest. Even if a second opinion takes a couple weeks it would be worth it. This process is upsetting enough. I can't imagine having a surgeon that doesn't hear your concerns. Keep us posted

ShetlandPony · July 2021

I'm not even going to comment on the medical questions. It is apparent to me that this is not a good match. I would get a second opinion as a way of interviewing a possible new surgeon that you can trust and with whom you have good communication. Can you really see yourself moving forward with this person? I doubt it will get better.

Bookpusher · July 2021

DebAl,

I asked about an MRI and he said it might be in my future at a later date but for now he would recommend getting the 3 biopsies done.

I just pulled up his doctor notes. Stated in the notes: “ If biopsies of the 3 areas are concerning this could lead us toward a mastectomy“ So he doesn't rule it out. Went on to say, “lumpectomy would still be the recommendation if 3 areas are benign"

I want this breast off. If there are 3 additional areas now, what will come down the road keeps circling in my brain. This breast is too busy for me.

Thanks for weighing in Shetland Pony.

I got scheduled for 2nd opinion next Thursday at another breast care center. New pathresults should be back in by then.

To any newbie reading this, I was freaked at the thought of having my first stereotactic biopsy. Little did I know when I wrote that post two weeks later I'd be enduring 3 more in one day. So take heart and don't be afraid.

DebAL · July 2021

if you want the busy breast off and are firm in your choice then find a surgeon that respects your decision! You will know when you find the right one even if it means a 3rd opinion. You don't need the added stress

My first oncologist was not the right fit. Couldn't explain it. Very firm in her decisions. We really never had a conversation. However, I was on board with the treatment plan and just wanted to get it done. Once I was on the other side I switched oncogists. It's like night and day now. I knew there way no way I could go thru a round 2 with her should that be in my future. Point being it's so worth finding providers that are the right fit. Fingers crossed for your appt on thursday!

Betrayal · July 2021

Do not let this surgeon touch you. The paternalistic behavior here is a clear flag that his is the only opinion that matters. I had a lumpectomy and then required a "completion" lumpectomy due to positive margins. It left me with a disfigured breast that is considerably smaller than my other breast (radiation also added to the distortion). I cannot imagine what your breast would look like after 3 lumpectomies and radiation. Aesthetics do matter to us and not to the surgeon who said " well, I saved your breast". Yes, but it doesn't look like one since my nipple is buried under the breast. Needless to say I fired him.

Get that second opinion. They are your breasts, on your body and you do have a right to be heard and have your input valued.

LivinLife · July 2021

You know my thoughts on this already Bookpusher! You've received similar feedback from the others. Sooooo glad you're going for a second opinion. If for some reason this next one isn't quite who you're looking for I can guarantee you I wouldn't go back to the first one!! Here's hoping surgeon number 2 is a good or even great match!!!

Redcanoe · July 2021

He doesn't sound like a good fit but honestly, I would want the biopsies before the surgery too in case there is invasive cancer present. If there is and if it is triple negative or her2+, you may want the option of chemo before surgery.

AliceBastable · July 2021

I agree with Redcanoe. Biopsies aren't a threat or something to bypass; they're a normal diagnostic tool to determine the course of treatment no matter if you go for a mastectomy or lumpectomy. But that said, your doctor sounds like the oncological gynecologist who did my hysterectomy, who was a patronizing shit.

Lille · July 2021

I'll be blunt with my opinion. Dump this surgeon and find a new one. You have every right to push for the surgery you want. I sat down with my breast surgeon for the first time to go over my initial biopsy, Er/Pr - high grade comedo necrosis (same as yours). The first thing she said to me was it's not your fault, you are doing everything right. This was my first mammogram after turning 4...42. When it came to treatment plans and lumpectomy versus bilateral mastectomy, she said... 'There are some surgeons who do not believe in doing a bilateral mastectomy, especially given [my] younger age.' And she looked me straight in the eye and firmly said, 'I am not one of those surgeons.' She also stated one of the reasons why a woman might opt for it is because they know they would need to be peeled off the ceiling every six months for scans, as that would have become my regimen. If I chose a lumpectomy, then every six months I would need to alternate between a mammogram and an MRI. For me my response to that was Awww Hell NO!

To your situation, my cousin, a couple years older then me was diagnosed a couple months after I was. Her surgeon refused to do anything but a lumpectomy. She switched out healthcare systems to a cancer center, had a BMX and Diep flap reconstruction. Her healing was longer and slower than mine but neither of us regret it for one second. Hers was upgraded on final pathology and on my final pathology they found ADH in the other breast, aka more unseen biopsies and excisions waiting to happen.

I know this is a difficult time and I'm sorry that are you going through it.

This is your choice. You are the one that has to live with it. Sending a few warm virtual hugs.

Rah2464 · July 2021

Bookpusher I am going to add to the chorus of voices - find another surgeon. It is apparent there is a lack of two way communication. The surgeon isn't truly hearing you about what you want. I cannot comment on the additional 3 biopsies versus just going ahead and removing the breast. Redcanoe has some valid points. If that is the case, at the minimum the surgeon is not fully explaining the why to you, also a failure. Sorry this mismatch is adding stress during a difficult time. Please listen to that inner voice that is unhappy and get that second opinion. Wishing you all the best.

Bookpusher · July 2021

Thank you everyone. Redcanoe, I appreciate you explaining the need for the biopsies.

This center is very highly regarded. I was so happy to be able to go there for treatment. Unfortunately, I was paired with a surgeon that looks at DCIS as a little problem that deserves a “little” surgery. (His words)

I know DCIS is a good diagnosis, it is my additional factors (grade 3 comedo, ER/PR -, etc etc) that was telling me I wanted a more robust approach as far as treatment options. I apologize to those who are fighting bigger battles than DCIS if I sound weak and whiney. I do appreciate your understanding.

ruthbru · July 2021

Bookpusher, have you met with an oncologist yet? If not, you might want to before you proceed. My opinion of surgeons is that they go into that field because they'd rather deal with people who are unconscious! They also are primarily looking at the surgery aspect of the problem; not the overall picture, which is what your oncologist will be doing.

*edited to add that meeting with an oncologist before surgery is not the normal procedure, but might be valuable in your situation.

wondering44 · July 2021

Hello,

I recently got my dx. I have an appointment to meet the PS on Tuesday. After reading his credentials I am not impressed. I have already requested my PS who did my aug/tummy tuck last year to request privileges at the cancer center to do my surgery or have my care moved to his hospital. You do NOT have to do anything you are not comfortable with for surgery. The surgeon works for you. Not the other way around.

Bookpusher · July 2021

Ruthbru! I laughed out loud (thank you!) when I read your comment about surgeons! I think you are right.

They only scheduled me with a RO. When I asked why I wasn’t seeing a MO they just said it was not on my recommended list of drs to see. I think they expected me to accept lumpectomy with follow up rads. My diagnosis was DCIS in right breast. My grade 3, comedo, and PR/ER negative status was not seen as contributing factors, I assume.

I am anxious to see how my second opinion appt goes. I was told that the “team” would be looking over everything that I in fact would not be getting just the surgeon’s opinion, but the teams opinion. That sounded good to me!

Wondering, I hope you get the PS you had before. Going in with full confidence in your surgeon is a big boost to your mental health during all of this.Best of luck.

SuQu31 · July 2021

Bookpusher,

I just wanted to add my experience. I also was diagnosed with DCIS, Grade 3, comedo necrosis and ER-/PR-. My surgeon actually recommended mastectomy and asked if I would like to have a bilateral mastectomy. I had a second opinion, who at first suggested lumpectomy and rads, but after looking at my MRI, which appeared to show the potential for spread in my lymph nodes, he also suggested mastectomy. (Fortunately, my lymph nodes were clear). As my surgeon pointed out, if there is a recurrence or new cancer that is hormone receptor negative, there are fewer tools in the toolbox for fighting it.

For me, I feel I have done my best to treat what I had and keep it from recurring. That doesn't mean it won't happen, but if it does, I will know that I did what I could. And people have more recurrences after mastectomy than is commonly discussed, so I never think of it as a complete “cure."

Obviously every situation and person is different, but I think it is important that your surgeon listens to you and your concerns. They are your breasts, after all!

Bookpusher · July 2021

SuQu31,

Thank You for sharing your experience. I am thankful this forum exist - such good information and advice. It helps to know a mastectomy was not an unreasonable request.

Cowgirl13 · July 2021

Bookpusher, I suggest that you get a second opinion outside of the current facility--your team may have the same view. Get the second opinion soon and I'm so sorry you have to deal with this surgeon. I second ruthbru's suggestion to meet with an oncologist. Good luck!

Betrayal · July 2021

This may seem silly but do not ask your current surgeon to suggest someone for a second opinion. He will most likely send you to someone he knows who will concur with his recommendation. Go with what cowgirl recommended re: using another facility.

Bookpusher · July 2021

Betrayal...I did not ask the surgeon for a recommendation for a 2nd opinion. I am going to another breast care center (in another state actually) for my 2nd opinion.

I hope my biopsy reports will be in so they can look at those. I am still reeling that they found 3 more suspicious areas and I had to have 3 more biopsies. My boob is again very bruised and sore, it had just started to feel better from the first biopsy. They said most likely path reports will be in by Tuesday. 2nd opinion appt is on Thursday. Fingers crossed they will have all the info they need to make a recommendation on treatment.

wondering44 · July 2021

Sounds like you are doing what is right for you! Kudos to you. I have found in the last week I am the best advocate for my patient care. My PS (aug/tummy tuck) called me this evening to discuss my options (on a Sunday). He is getting me a different breast surgeon and I am moving my surgery to his hospital. He will perform my plastic surgery and I know I am in good hands with a doctor who will do his best to give me clear expectations and the best reconstruction for a mastectomy. I was terrified to meet the PS recommended by the other hospital after researching his credentials and seeing photos of his work. I can't figure out why a hospital would recommend a doctor for breast reconstruction who does not specialize in it. And to shows in his work. I will keep my current Oncologist at the other hospital. She is great. My PS even recommended keeping her because he used to work with her and he thinks she is the best in town. I finally have a roadmap that I am comfortable traveling on. It helps to research and ask rather than take the option first given to you if you feel it does not suit who you are or what you need. Best of luck to you on your next appointment. May you find the right fit and the care you want. You deserve the best right now in this journey.

At odds with surgeon.

Comments

Categories