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Do you question the surgeon's recommendation?

So new to this and somewhat still in shock. I have a diagnosis of invasive mammary adenocarcinoma in my right breast and one lymph node with metastatic carcinoma. In record time, I have been tested, scanned, biopsied and set for surgery. The general surgeon asked me how determined I was to save the breast. I replied at this point (totally still numb with this news) that I was more determined to save my life. He said that he would recommend a mastectomy followed up with whatever best treatment is then determined to be most effective. My inclination is to follow the experts advice. Now that I've had a few days for all this to settle in, I'm wondering if I should ask more about the options of a lumpectomy or even question this. I have not spoken to an oncologist. I gather that follows the surgery and pathology results.

My question is, does one just trust in the surgeon's recommendations or question whether a less radical move is possible? I tried to discuss this with my kids and partner but I see a look of disbelief and fear in them that I would even consider questioning the doctor. He also said reconstructive surgery at this time might delay the surgery date so I put that off the table until a later discussion.

12 Replies
Whitelilies
2447 Posts

@islandgirltoo Hello…..I will tag @Runner Girl - Kindly, could you share your amazing list of questions, to ask the Surgeon, (Re breast cancer)… before surgery “selection” is done?

(Sorry, I am not experienced in this area…..just hoping her list will be helpful for you)

Regards

Whitelilies

ACH2015
2351 Posts

@islandgirltoo

I believe if we have questions about a treatment or the depth of it, it's only right to get your questions answered.

It would put your mind at ease to understand the reasons for recommending a mastectomy vs a lumpectomy. Then you can make the important decision with more information available. My surgeries were very invasive (not breast) and until I understood there was no alternative, and the reasons for the recommended surgery, I found this difficult to accept. Once my questions were answered - I went with the surgeons recommendations.

Hope this helps.

ACH2015

Mosi
215 Posts

@islandgirltoo
Super discussion. We do have knee jerk reactions when in fear and then the questions come along. I was very convinced this breast cancer was just a blip in the road so I resisted/ questioned any treatments that looked like permanent damage to me. In the end my questions just confirmed their recommendations.
You have the advantages of having the additional scans and biopsies that contain additional information for you and your surgeon. The fact that your surgeon asked about lumpectomy may indicate that is a real possibility.
Wishing you all the best while you process this. The first of many decisions along the way

Kasey

@ACH2015 thanks for your reply. Part of the problem here in BC (although we are certainly not unique in this) is the health care system is so stretched right now. I almost feel guilty in taking up the surgeon's time. My own doctor is on holidays right now or I'd give her a call and ask for her opinion. She is very caring and open to talk.

@Mosi thx Kasey. I think I will call their office on Tuesday (Monday is a holiday here) and ask to speak again to the surgeon. I only just met with him briefly after my diagnosis. At that time as I mentioned, I was just still spinning with the news. Of course, I don't want to play Russian Roulette with this beast but is it just as safe to try the lumpectomy first? I guess that's my question.

Pat

ACH2015
2351 Posts

@islandgirltoo

Your questions are important ones to ask. Don't feel guilty about seeking answers toward making important decisions. Perhaps a phone consultation could be arranged for you. Have your questions prepared and written down to help ensure you get the most out of the consult.

Keep well

ACH2015

Climbing
196 Posts

I think thats an important decision to make. I would ask very detailed questions regarding reccurance and survival etc with your surgeon. If you are hesitant, for reassurance I might even go as far as having a second opinion from someone else in the medical community, oncologist etc or another surgeon. Sometimes this can be the difference. My doctors all have different kind of approaches. You'll want to make an educated and informed decision in the end and want to have all the facts.

Runner Girl
2894 Posts

@islandgirltoo
Welcome, glad you've found us. Thanks for the tag @Whitelilies

You are fortunate to have time to make this decision. I had all of 5 minutes. I chose lumpectomy (turns out I had 3 tumors) and sentinel node biopsy (nodes were clear). My cancer was IDC (invasive ductal carcinoma) and it was ER+ (estrogen positive) and HER2+ (human epidermal growth factor receptor 2 positive). I was Stage IIA and Grade 3. The surgeon said he could not guarantee that I would not need radiation if I had a full mastectomy. So I made the best choice I could at the time, I chose lumpectomy. It was less invasive and we could always take more if we needed to. I was also a few weeks away from my 11th half marathon and I intended to run it. Having a less invasive surgery would allow that. Now that I am 4 years out from that I question if I made the right choice. I've been left with only the upper half of my right breast, the lower section is gone. The scarring is just plain ugly. It's hard to find a bra that is comfortable with where the scar sits and I need padding where the missing breast tissue was. It's also very painful for follow up mammograms. Because I had cancer they want extra extensive mammogram pics of that breast. With the scar tissue and all it just hurts. My breast density is also Grade D which means mammogram alone will not see potential cancer, so I also have an ultrasound each time.

The rest of my treatment was 6 rounds of chemo, 17 rounds of herceptin, 16 rounds of whole breast radiation and 5 rounds of boost (targeted) radiation focused on the tumor bed. I have completed 2 years of tamoxifen and am a year into my 3 years of Anastrozole.

Focusing on the now is good, but focus on the future too, where is your tumor, what will be left behind when they take it and the extra they need for clean margins? How will it look? How will the scar feel later, will it interfere with clothing, wearing a bra.

Here is my list of questions as mentioned by @Whitelilies

Here is a list of questions for your surgeon:
• Am I a candidate for a lumpectomy?
• Do I need a mastectomy? Is reconstruction (plastic surgery) an option for me? What are the advantages and disadvantages? Is it possible to avoid removing my nipple and areola?
• Do the lymph nodes in my underarm need to be removed?
• What is a sentinel lymph node biopsy? What are the benefits and risks? Would you recommend it for me?
• What is the risk of lymphedema with a sentinel lymph node biopsy? With axillary lymph node dissection?
• What is the benefit of having more lymph nodes removed?
• What are the side effects of these procedures? Can they be prevented or minimized?
• Should I consider chemotherapy before surgery?
• Will I need radiation therapy after surgery? Does this affect my reconstruction options?
• When do I need to make a decision about surgery?
• What should I do to get ready for the operation? Do you have recommendations on how to help me relax before surgery?
• What medications and supplements should I stop taking? Should I stop taking hormone replacement therapy? What about birth control pills?
• Will you describe exactly what you will do during this operation, and why?
• Will my tumor be saved? Where will it be stored? For how long? How can it be accessed in the future?
• What are the potential risks and side effects of this operation? What can be done to ease side effects following surgery?
• Does the hospital offer programs that help aid healing?
• What can I expect regarding the operation?
• Will I need to be admitted to a hospital for this operation? If so, how long will I stay in the hospital?
• How long will my surgery take?
• What type of anesthesia will I need for this operation?
• How long do I have to wait for my preoperative test results? Do I call you, or does your office call me?
• Will a pathologist examine the tissue and write a report? Who will explain that report to me?
• What are the possible complications for this type of surgery? How would I know if there is a problem?
• How long will it take me to recover after the surgery?
• When can I return to work and other daily activities?
• Will I have stitches, staples, and/or bandages?
• Will there be permanent effects from the surgery?
• Where will the scar be, and what will it look like?
• What type of clothes should I bring to go home in? Will I need a special type of bra?
• Are there instructions or post-operative care pamphlets I can take home with me? When can I shower or bathe?
• Will I need to have surgical drains? What does this mean? How long will the surgical drains be in?
• Do I need a nurse to visit my home after surgery? How is this arranged?
• When will I need to return for a follow-up appointment?
• Will I need help at home after the surgery?
• What kind of pain will I be in afterwards? Can you help me manage my pain?
• When should I call your office if I experience any side effects?

By the way, I ran my 11th half marathon 3 weeks after my lumpectomy in a time of 2 hour and 14 minutes. My surgeon asked me “why”, not being athletic in the least he did not understand.

happyhiker1
45 Posts

@islandgirltoo
I can relate to your questioning, probably many of us have been in similar situations. The replies here give great advice. I was given very little time to decide betw a lumpectomy and mastectomy, maybe about 5 minutes like another person here, and opted for lumpectomy as I was early stage. But the surgeon didn't take the time to explain the repercussions of each option. Now, 2.5 yrs later after a mastectomy 3 days ago since bc recurred in same breast, I wonder if I should have had it done back then. Now my quandary is was it really necessary this time around for the axillary dissection that was done, leaving me with no nodes on that side. I don't yet have the pathology results, and hoping all nodes are negative, but wish the surgeon had allowed me more time to understand why she was going to do it. Her way of presenting it was to say she would have ‘no choice’ but to remove all nodes if a sentinel node was not found. Your surgeon seems to be more collaborative in proposing a choice to you, at least that is very positive!

@Runner Girl Sorry for the late reply. I had no idea I had a reply until I went back into this site to post an update. I would have thought there would be a notification womewhat like Facebook but I'm still floundering around in this site ;)

I spoke to my surgeon today and had my list of questions ready. BTW thank you for that very thorough list in your message. Some of those I had the answers to and some I will definitely explore. I asked him again why he recommended a mastectomy over a lumpectomy. It appears I have known cancer in one place in the right breast and one lymph node in the underarm. The other node (nodule?) in the breast was not biopsied! Why? I have no idea. Why when the radiologist has you frozen, has the ultra scan cranked up and at the ready and is biopsying (is that even a word?) she didn't do the second nodule in the breast I have no idea. So now he is saying that if I get another biopsy of that spot and it turns out to be benign, a lumpectomy might be a possibility. If it's cancerous, the amount of tissue that would have to be removed would be likely very disfiguring and I may as well go the mastectomy route. So for the immediate, my surgery is pushed back. I'm scheduled for a biopsy on what would have been my surgery date next Tuesday. Did I do the right thing? I don't know. I did ask him if I was putting myself at risk by holding up the surgery. He said no.

I think my family is trying to respect my decision to pursue this and at the same time, they likely think I'm nuts to delay this. It's good to talk here to people who have been through this and are not emotionally vested in these personal decisions.

Congrats on the run!

Pat

@happyhiker1Thanks for your reply and my apologies for my late reply. I didn't get a notification. I'll check this site regularly now.

After your lumpectomy, did you find it quite disfiguring and painful dealing with the scaring. In reading runner girl's reply, she was not happy with those results. Do you think if you had originally opted for the mastectomy, you would not have had to deal with a recurrence? I'm so questioning my decision to have a biopsy on the node that they didn't do a biopsy on thereby delaying the surgery. I have no idea why they did not do this at the time. I'm a just a bundle of confused energy right now. I had somewhat resigned myself to the mastectomy scheduled for next week and now I'm back to the testing and waiting.

How are you doing now 5 days in? I don't know what an axillary dissection is but I'm going to look it up. I'm learning more and more about this wretched disease.

Pat

JenG
165 Posts
islandgirltoo‍ the tagging notification system is hit and miss right now due to a technical issue, so checking the site is a good idea for the time being. Also check your notification settings just in case… :)

jeng
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