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Topic: Received An Incomplete Mastectomy? HELP!

Forum: Breast Reconstruction — Is it right for you? Discuss timing and various procedures and techniques.

Posted on: Nov 10, 2019 12:36PM - edited Nov 10, 2019 12:39PM by Wheatscapes

Wheatscapes wrote:

Hello everyone,

I just transferred my care from a community-based cancer center to a university-based NCI due to a mutated ATM gene. So far I've had a bilateral mastectomy, 12 weekly rounds of Taxol/Herceptin and one Herceptin-only infusion. I had TE's placed over the muscle at time of mastectomy. I am due to have my exchange surgery this Thursday.

Imagine my surprise/horror when my new breast surgeon took one look at my chest and stated that I received an “incomplete mastectomy!" She grabbed a portion of my inner reconstructed (TE) left breast and said “this is a lot of tissue, don't you think?" She then told me to cancel my upcoming exchange surgery and see her for a pre-op visit and a consult with the plastic surgeon she works closely with. My husband said, “So we are going back to square one with the overnight hospital stay, huge incisions and drains...everything?" She said yes. She then sent me for an immediate ultrasound with a well-respected radiologist to make sure I didn't have a recurrence in the remaining breast tissue, and to determine how much breast tissue was remaining. I don't have the ultrasound report, but my MO's NN read it to me and I think I heard her say 2.4 cm here, .5 cm there....etc.

I immediately started researching online and it seems best practices call for only up to 3mm thickness of breast tissue be left behind. Now things get cloudy for me regarding where this “thickness" starts, as we all have skin, then fat, than a marbling of fat/breast tissue and then breast tissue. I was pretty heavy when I had my mastectomy, and still have a lot of weight (40+lbs) to lose. I have lost over 30lbs so far so that gives you an idea of how much fat I had on my body at mastectomy.

I contacted the surgeon who performed my mastectomy and she was incredulous. She said that she has been performing numerous mastectomies for over 20 years and that she's never had anyone say that about her work. She wasn't being close-minded or defensive, just shocked. She has offered to review my case and see me immediately. Her nurse wasn't as diplomatic as she was, muttering word like “defamation," “slander," when referring to the other (much younger and less experienced) breast surgeon.

So here I am, standing here four days before my exchange surgery not knowing what to do. My original breast surgeon came highly recommended. I just decided to transfer all of my care to the NCI for convenience, continuity of care in a team environment, and comprehensive care in a research setting.

I don't know what to do? I have two surgeons completely contradicting one another. I feel like getting a third opinion, but at this point I'm shellshocked and afraid anyone I go to will want to cut on me just to make money.

I'm so lost. Help

Surgery 6/4/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 7/9/2019 Herceptin (trastuzumab) Chemotherapy 7/9/2019 Taxol (paclitaxel) Hormonal Therapy 10/27/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/15/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+
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Nov 10, 2019 03:27PM buttonsmachine wrote:

Wheatscapes, I am sorry this is happening to you. I had a somewhat similar situation, although in my case the "incomplete mastectomy" left behind active cancer, so that had to be dealt with very aggressively.

I was originally treated by community doctors, and my original surgeon was very experienced and highly recommended. However, a lot of tissue was left behind after my right mastectomy, including cancer cells - but I didn't know that at the time. A few months passed, and things got weird. I went to an NCI center, and upon physical examination they said I'd had "sub-optimal" surgical management previously, and that removing more tissue was necessary to get local control of the cancer. The NCI doctors basically said that way too much tissue was left behind, and while that might have been appropriate in some cases, in my case it was a huge mistake. The NCI center was 100% right. It's a hard pill to swallow that my original surgeon wasn't aggressive enough in surgery - I have really suffered because of that. But at the same time I'm so grateful that the NCI doctors were able to salvage the situation. Some people at the community surgeon's office tried to give me a guilt trip about going elsewhere, but I didn't fall for it. I can say that in my experience, the quality of care at NCI centers is far superior, and I wish I had transferred there sooner.

Have the NCI doctors told you why they want to remove more tissue? Are the NCI doctors concerned about cancer cells being left behind? If so, I would definitely consider their fears. Don't think twice about the egos at stake for the community doctors - your life is all that matters, not their egos. The important thing is that you get good care, because YOU have to live with the consequences.

Initial diagnosis at 32 years old. Chest wall resection 18 months later due to skin metastasis, probably from needle seeding during initial biopsy. Skin graft from right thigh! Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 9/30/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/31/2017 Whole-breast Hormonal Therapy 4/30/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 9/2017, IDC, Right, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 10/31/2017 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 12/26/2017 AC Dx 1/2018, IDC, Right, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 4/30/2018 Lymph node removal: Right; Mastectomy Radiation Therapy 5/9/2018 External: Lymph nodes, Chest wall Hormonal Therapy 6/30/2018 Zoladex (goserelin) Chemotherapy 6/30/2018 Xeloda (capecitabine) Hormonal Therapy 1/14/2019 Aromasin (exemestane)
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Nov 10, 2019 09:24PM SimoneRC wrote:

Hi Wheatscapes!

So sorry to hear about this! But, at least it sounds like you are now at an NCI which is an improvement! Yes, getting the tissue down to super thin margins is important. Having a pathogenic mutation of the ATM gene and leaving that much tissue would not sit well with me. Yes, your first surgeon is going to be defensive. Surgeons by nature have big egos and don’t like to hear they messed up. It’s in your rear view mirror. Keep moving. Between my sister and I, we unfortunately have lots of experience at NCI hospital. In no way have we encountered surgeons who just want to cut. If the NCI hospital tells you your mastectomy was incomplete, I would believe them. If you feel uncomfortable, you can send your images to another NCI for a second opinion. MD Anderson, for example.

I am super sorry to hear you are dealing with this. It is a big bump in the road, but you will get past it. Sending strong thoughts your way!


ATM Gene Mutation, Deletion. IDC w/Lobular Features and Focal Mucinous Features. Pre Pectoral Reconstruction. Hysterectomy Surgery 4/6/2018 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 5/6/2018 Arimidex (anastrozole) Surgery 7/3/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/30/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/30/2019 Prophylactic ovary removal Surgery 8/6/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Nov 10, 2019 10:22PM hapa wrote:

Hi Wheatscapes,

Well, I had kind of the opposite experience as you. I had my BMX at an NCI center and went to a different NCI center for radiation. After my RO saw my set-up scans, he told me that my BS had done the surgery with extreme care and attention to detail and it was very complete, but that he often has to send patient for a second mastectomy, especially when they have a mutation which makes recurrence likely. He said he's had patients that just look like someone took an ice cream scoop or melon baller and scooped out the core of the breast tissue. My BS explained that she spends hours cutting out the breast tissue because it often has "fingers" that extend into the subcutaneous fat, and the residents that work with her are always surprised to see that. I was able to see on my pre-op scans what she was talking about. My BMX took about five hours for her to complete.

What I don't understand here is how your new BS knows that you had a lot of tissue left behind. Did she look at the imaging? Has your old BS looked at the imagining? I would sit down with both doctors and have them explain to you what they are seeing on the imaging. But really I would lean toward the NCI center. They tend to have doctors who do nothing but look at breast imaging and do breast surgeries day in and day out, whereas the doctors at a community based center would be doing a variety of procedures instead of concentrating on just breast surgery.

Dx 12/14/2017, IDC, Right, 3cm, Stage IIIA, Grade 3, ER+/PR+, HER2- (FISH) Hormonal Therapy 1/2/2018 Zoladex (goserelin) Hormonal Therapy 1/2/2018 Arimidex (anastrozole) Targeted Therapy 2/14/2018 Ibrance (palbociclib) Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 10/22/2018 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 12/21/2018 Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Nerlynx
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Nov 10, 2019 11:25PM - edited Nov 10, 2019 11:40PM by Wheatscapes

Buttonsmachine - So sorry you had to go through a second surgery and recurrence due to your first surgeon's mistake. Very glad to hear that the NCI you went to was able to salvage the situation for you. I cannot imagine how scary it was to have a recurrence and then to find out it was due to a sub-optimal surgical procedure and should not have happened.

The NCI surgeon says she wants to remove more tissue because I have an ATM mutation which places me at high risk of recurrence. I don't think she is concerned that cancer was left behind, but leaving excess breast tissue is an invitation for my cancer to recur. Simple as that. And oh yes, surgeons have huge egos. I'm not worried about telling her I'm transferring my care. I'm not one tiny bit afraid of doctors.


Simone - Hey girl. Glad you caught this thread. I took your advice and transferred my care to an NCI and it looks like you may have ended- up saving my life. If not my life, at least a recurrence. I cannot thank you enough.

I am bummed that I have to start all over six months into treatment...well, start all over surgical-wise, but I will happily have another surgery with drains and all that nastiness to avoid another bout of cancer. I guess I won't be having exchange surgeryreconstructive surgery for at least 3-4 months now. Oh well. I can handle that.

Hapa - I had no idea incomplete mastectomies were so common! Makes one wonder if they don't account for a LOT of recurrences! Glad you had an optimal mastectomy. From what little research I've done, it's not uncommon for milk ducts and lobules to reach really deep into surrounding fat and other tissues. There's a lot of debate surrounding nipple sparing mastectomies not being safe for this very reason. My new breast surgeon was able to just look at me and tell that my mastectomy was incomplete. She sent me for an ultrasound by a very renowned radiologist in the same building. The radiologist said that there was substantial amounts of breast tissue left behind.

I speculate that these breast surgeons get pressured into leaving aesthetically pleasing shells, so that reconstruction is a breeze and women are happy with the results, and they get more referrals. But they more than anyone should know how dangerous of a game that is

I hope you ladies are having a nice Sunday evening! I will update as more info becomes available. I re-visit the NCI BS and PS tomorrow. Gearing up for another mastectomy

Surgery 6/4/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 7/9/2019 Herceptin (trastuzumab) Chemotherapy 7/9/2019 Taxol (paclitaxel) Hormonal Therapy 10/27/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/15/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+
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Nov 11, 2019 07:29AM SimoneRC wrote:

Wheatscapes!

You’ve got your head in the game! Putting all of the pieces together. That is so great to hear!

There are some great doctors and local facilities out there. We mutants, however, have special considerations and it is great to hear that you are now in an academic medicine setting!

Sending all kinds of positive vibes your way! Let us know how the appointment goes today.


ATM Gene Mutation, Deletion. IDC w/Lobular Features and Focal Mucinous Features. Pre Pectoral Reconstruction. Hysterectomy Surgery 4/6/2018 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 5/6/2018 Arimidex (anastrozole) Surgery 7/3/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/30/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/30/2019 Prophylactic ovary removal Surgery 8/6/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Nov 11, 2019 02:15PM StAuggie wrote:

Oh Wheatscapes...as if it isn't bad enough to do it the first time, now you have to do it again! I'm so sorry! I'm so very thankful that it was caught by your new surgeon though, so they can take care of it.

Dx 4/12/2019, IDC, Left, 1cm, Stage IB, Grade 3, ER-/PR-, HER2- Chemotherapy 5/8/2019 AC + T (Taxol)
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Nov 11, 2019 05:18PM buttonsmachine wrote:

Wheatscapes, it sounds like you have a good handle on the situation. I think the concerns about the incomplete mastectomy combined with ATM mutation are valid, and it sounds like the NCI doctors are thinking ahead about that. That's definitely a good thing! Best wishes to you going forward.

Initial diagnosis at 32 years old. Chest wall resection 18 months later due to skin metastasis, probably from needle seeding during initial biopsy. Skin graft from right thigh! Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 9/30/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/31/2017 Whole-breast Hormonal Therapy 4/30/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 9/2017, IDC, Right, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 10/31/2017 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 12/26/2017 AC Dx 1/2018, IDC, Right, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 4/30/2018 Lymph node removal: Right; Mastectomy Radiation Therapy 5/9/2018 External: Lymph nodes, Chest wall Hormonal Therapy 6/30/2018 Zoladex (goserelin) Chemotherapy 6/30/2018 Xeloda (capecitabine) Hormonal Therapy 1/14/2019 Aromasin (exemestane)
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Nov 20, 2019 01:53PM - edited Nov 20, 2019 08:42PM by Wheatscapes

Hi all -

I'm five days post second bilateral mastectomy. Oh my gosh. The second procedure was way more extensive and painful. New PS took breast tissue off my chest wall, so my chest is sunken/concave. Same with under my arms. I'm not freaking out because my new plastic surgeon said that I would require a couple more fat grafting surgeries before I would see the final result. All in all, more tissue was removed during the second procedure than the first. 🤔 I was on the table for over four hours

So far my implants look amazing - perky and zero sagging like my TE's were. My side boobs (aka - leftover breast tissue), are gone and my arms lay straight against my body again! They were sticking out and I looked like zombie! And unlike what my first PS said, it was all covered by my insurance! Yay! I was under the impression I was going to have to pay another $6K to have the side breast tissue removed. 🤷🏻😉

Still waiting on pathology from second surgery. Keeping fingers closed it's clear. Consulted with the NCI's aesthetician today about a new skin care regimen to address changes caused by chemo, surgery, tamoxifen, etc. Wow....going to an NCI is so much better in so many ways. On the top of that list is definitely making sure one gets an actual bilateral mastectomy. So good to be playing in the big leagues!

Next stop, oophorectomy. New MO ants my ovaries out and me on AI's. I asked my first MO about this and he just shrugged. I'm still kinda freaked out I was receiving lazy, life-threatening care.

Surgery 6/4/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 7/9/2019 Herceptin (trastuzumab) Chemotherapy 7/9/2019 Taxol (paclitaxel) Hormonal Therapy 10/27/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/15/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+
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Nov 21, 2019 12:08AM SimoneRC wrote:

Keep on feeling better, Wheatscapes! Sounds like you are moving in the right direction each day!

So glad you are in a much better place for treatment! It can really make such a big difference. Just ok is not good enough when it comes to your health.

Yours in ATM-ness!


ATM Gene Mutation, Deletion. IDC w/Lobular Features and Focal Mucinous Features. Pre Pectoral Reconstruction. Hysterectomy Surgery 4/6/2018 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 5/6/2018 Arimidex (anastrozole) Surgery 7/3/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/30/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/30/2019 Prophylactic ovary removal Surgery 8/6/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Nov 23, 2019 01:24PM buttonsmachine wrote:

I'm so glad you're in good hands, Wheatscapes! I'm wishing you a swift recovery.

Initial diagnosis at 32 years old. Chest wall resection 18 months later due to skin metastasis, probably from needle seeding during initial biopsy. Skin graft from right thigh! Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 9/30/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/31/2017 Whole-breast Hormonal Therapy 4/30/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 9/2017, IDC, Right, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 10/31/2017 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 12/26/2017 AC Dx 1/2018, IDC, Right, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 4/30/2018 Lymph node removal: Right; Mastectomy Radiation Therapy 5/9/2018 External: Lymph nodes, Chest wall Hormonal Therapy 6/30/2018 Zoladex (goserelin) Chemotherapy 6/30/2018 Xeloda (capecitabine) Hormonal Therapy 1/14/2019 Aromasin (exemestane)

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