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Topic: Odds of getting prophylactic a year or two down the road

Forum: Surgery - Before, During, and After — Surgical options and helpful tips for recovery and side effects.

Posted on: Jul 21, 2021 11:15PM

Bookpusher wrote:

Has anyone gotten a prophylactic mastectomy a year or more past their first mastectomy? My surgeon’s NP mentioned this as a possibility. Said it might be better to get the cancer breast treated by single mastectomy then revisit subject of prophylactic once I have recovered from that. I am 70, and I am wondering if that could factor into that advice?

Would Medicare pay for prophylactic down the road if you had no signs of cancer or issues other than being lopsided and anxiety ridden?

Thanks!

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Jul 22, 2021 09:40AM LaughingGull wrote:

Hi Bookpusher,

I got a prophylactic mastectomy 6 months after the initial surgery. I had private insurance, not Medicare, and didn't have any problem for approval. I had extremely dense breast tissue that hid my cancer from the 3D mammograms, and I found my cancer myself, when it had already extended to my lymph nodes, and this 3 months after a clear mammogram and thorough exploration. After chemo, clinically, my cancer seemed to have melted; a pre-surgery MRI came back clear; however, the surgery found a 3cm solid tumor. That's what made me change my mind about a second mastectomy. My breasts seemed to be too dense for any kind of screening to be effective. I had dutifully done like 20 years of breast screening, from ultrasounds to mammograms. I decided that I didn't want to go through one more useless mammogram, ever. Aesthetically, the result of the reconstruction would look better, but that was a secondary consideration.

Best luck with your decision, your MO and BS offices should be able to tell you if Medicare will pay for that mammogram. The reason why you want the second mastectomy is the lopsidedness? If that is the case, I totally respect that, but I would also give it some time, since you may need some time to process everything you have gone through, and you may feel different some time down the road. Because once you remove that breast, it will be gone forever. No way back. Whereas if you wait you can reconsider down the road and remove it then.

Best,

LaughingGull

ACx4, THPx4, HP (to complete 1y); Nerlynx (1y); AI (expected 10y), Surgery: BMX + ALND, Reconstruction, Oophorectomy. Radiation. Dx 10/26/2017, IDC, Right, 3cm, Stage IIB, Grade 3, 2/6 nodes, ER+/PR+, HER2+ (IHC)
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Jul 22, 2021 09:47AM Aram wrote:

LaughingGull, do you know why it was not done in one surgery? My surgeon suggested the same, first affected breast, and then the other one. I am not sure why. I am going to ask when I see him again but wanted to know what were the reasons in your case.

Dx at 40, BRCA1 Dx 2/5/2021, IDC, Left, 1cm, Grade 3, ER-/PR-, HER2+ (IHC) Dx 2/5/2021, IDC, Left, 3cm, Grade 3, ER-/PR-, HER2+ (IHC) Chemotherapy 3/10/2021 AC + T (Taxol) Targeted Therapy 6/2/2021 Perjeta (pertuzumab) Targeted Therapy 6/2/2021 Herceptin (trastuzumab)
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Jul 22, 2021 11:01AM Bookpusher wrote:

The surgeon said he was concerned with the extra toll the bilateral would have on me. Longer surgery, being under anesthesia longer, harder recovery. He did state if I was younger he would probably recommend bilateral. I am 70, no other known serious medical conditions.

I have other considerations for bilateral. High anxiety for recurrence or new cancer diagnosis on other breast, mother had breast cancer (but not until 63), I am basically ER and PR negative. My DCIS is high grade with comedo neucrosis. I am a full D cup which is not super large, but I am small framed. I wonder about back problems cropping up.

And I did not know if Medicare would pay later. Thanks for your input.

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Jul 22, 2021 11:54AM Dani444 wrote:

I went for a prophylactic mastectomy about a year and a half after my UMX. I had a BIRADS 4c on my first mammogram after treatment. The wait for the biopsy felt horrendous to me. My breast surgeon completely supported my decision and insurance was not a problem. I then had to have another biopsy just before surgery so I knew I had made the right decision for me. I do have somewhat better symmetry also

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/25/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Surgery 8/20/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Surgery 4/19/2021 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 22, 2021 11:56AM star2017 wrote:

I think this is not uncommon. I waited six months because I was pregnant during my first mastectomy. Someone else I know still hasn't had a prophylactic one over a decade later but doctors still discuss it an option for her to pursue.

Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/17/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/29/2017 AC + T (Taxol) Surgery 4/18/2018 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Radiation Therapy 5/21/2018 Whole-breast: Breast, Lymph nodes Surgery 10/24/2018 Prophylactic ovary removal; Reconstruction (left): Silicone implant Hormonal Therapy 6/19/2019 Arimidex (anastrozole) Dx 5/2021, IDC, Right, 6cm+, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy Verzenio Radiation Therapy External: Bone Hormonal Therapy Faslodex (fulvestrant)
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Jul 22, 2021 12:01PM SpecialK wrote:

bookpusher - are you having reconstruction? If not, bi-lateral surgery is pretty well tolerated. I would want to be very sure that Medicare will cover a truly prophylactic surgery before deciding to forego having it all done at one time with the hope of doing another surgery later. It is important to also consider that you could develop a co-morbidity in the interim that makes additional surgery inadvisable or more risky as well, thus removing or complicating that option. Generally, Medicare will cover mastectomy based on "medical need" but I would press your surgeons on how they would code the second mastectomy if there is not actual "medical need" and if they have had success getting Medicare to cover a truly prophy surgery.

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Jul 22, 2021 05:17PM - edited Jul 22, 2021 05:17PM by LaughingGull

Aram,

At the time of first surgery, to me, it felt unnecessary to remove a healthy organ. I was hoping for a good outcome after surgery, perhaps even a complete response. Neither the oncologist nor the surgeon suggested it as an option. It wasn't on the table at all. It was after the surgery revealed a 3 cm tumor that didn't show in MRI, and after thinking about future screening, and after finding recovery from the surgery easier than expected, and after realizing that I didn't miss my removed breast, that I thought I would prefer to have the other one removed as well.

LaughingGull

ACx4, THPx4, HP (to complete 1y); Nerlynx (1y); AI (expected 10y), Surgery: BMX + ALND, Reconstruction, Oophorectomy. Radiation. Dx 10/26/2017, IDC, Right, 3cm, Stage IIB, Grade 3, 2/6 nodes, ER+/PR+, HER2+ (IHC)
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Jul 22, 2021 05:24PM Aram wrote:

Thank you LaughingGull. So different circumstances. My own tumors were missed by ultrasound 2 months before I found one of them so my decision from the beginning has been BMX

Dx at 40, BRCA1 Dx 2/5/2021, IDC, Left, 1cm, Grade 3, ER-/PR-, HER2+ (IHC) Dx 2/5/2021, IDC, Left, 3cm, Grade 3, ER-/PR-, HER2+ (IHC) Chemotherapy 3/10/2021 AC + T (Taxol) Targeted Therapy 6/2/2021 Perjeta (pertuzumab) Targeted Therapy 6/2/2021 Herceptin (trastuzumab)
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Jul 22, 2021 07:02PM Bookpusher wrote:

I am not having reconstruction, SpecialK, regardless whether I end up MX or BMX. That’s the only thing I am 100% sure of.

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Jul 22, 2021 07:33PM - edited Jul 22, 2021 07:39PM by SpecialK

bookpusher - if you are strongly considering bi-lateral surgery, I would personally do it in one go now if you feel you are otherwise healthy enough to undergo it. Without reconstruction it is definitely not as long a procedure. Are you in a position to have family support or help when you come home? Otherwise, you need to be prepared for the possibility of being unable to have another surgery later - either because a surgeon will not remove a "healthy" breast, or Medicare will not approve it. I have seen a number of people on this site who have had unilateral mastectomy when they wanted bi-lateral, and have been unhappy about it. I spent about 18 months with one reconstructed D cup side and one flat side - not the same situation as a native breast and a uni mastectomy - but it presented challenges with clothing and I did feel significantly unbalanced, as I am petite. I was much happier when that was rectified, but that is just my individual situation. Has your surgeon indicated what specifically he/she is worried about in regards to doing a bi-lateral? Also, wanted to note that I have read your other posts about lumpectomy versus mastectomy, and wanted to let you know that I was initially offered a lumpectomy. I had some time to consider options because my surgeon was attending a conference and I needed to line up a consult with a plastic surgeon. I ended up opting for a bi-lateral mastectomy because I had 20 years of issues and felt that if I could make cancer in one breast, I could do it in the other - so I wanted both off. My surgeon was totally cooperative and supported my wishes. Turned out to be the right choice - 2.6 cm of IDC plus a lot of DCIS in the right side that was also node positive - not discovered until surgery - and the "prophylactic" side was full of ADH and ALH - a ticking time bomb.

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Aug 2, 2021 02:02PM NatureYogi wrote:

I had right breast removed July 23, I wanted bilateral, but since I have IBC Triple Negative, they wanted to get me through surgery and heal quickly for radiation without any complications. So, as soon as I can, I'll get the left breast removed. My cancer was not detected on mammogram or ultrasound, through biopsy of swollen lymph node it was discovered. After MRI, a mass was seen in breast, at this point I was stage IIIC. After I heal from radiation, I'm going to push to have left breast removed for peace of mind and symmetry.

Dx 2/11/2021, IBC, Right, 6cm+, Stage IIIC, Grade 3, ER-/PR-, HER2- Chemotherapy 3/10/2021 AC + T (Taxol) Surgery 7/23/2021 Lymph node removal: Right; Mastectomy: Right

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