Since I've starting sharing my news, and this blog, with friends and family, I've had a couple people ask me why I'm opting for the double mastectomy, when only a single mastectomy of my right breast is medically necessary.
First, I think it's important to note that such a decision is obviously very personal, and every patient needs to make their own decision based on their diagnosis and medical history, in conversation with their medical professionals, and taking into consideration their own priorities and feelings about self-image. Each person's thought process will be unique to them, and what feels right to one person might not work for someone else. This post is just a record of my personal decision.
If you ask me to describe myself, I would say I am nothing if not thorough! (As evidenced by this blog...) But in choosing words to describe me, a close second might be "risk averse". I will always wear my seat belt, I will always bring along an umbrella, or a light jacket, just in case.
This whole process - from finding the lumps to making appointments and having mammograms and ultrasounds and then an MRI and biopsy and waiting for phone calls with news - has been super stressful. I NEVER want to go through it again.
At this point, my doctors and nurses have told me that my MRI shows "something" in my left breast. That means it's possible I already have cancer in my left breast. Also, the "variants of unknown significance" in my genetic testing say I "may" have a hereditary risk; it hasn't been ruled out. Combined with the fact that I do have a family history of breast cancer (two paternal aunts had it), all of it together means there's a real possibility of having to go through this whole process again in the future for my left breast. Just, no.
I might have worried about being overly aggressive by opting for the double mastectomy, except my breast surgeon characterized the decision as a "shared decision" established by us both together. It definitely offers the most peace of mind, which is important to me as someone who is prone to anxiety.
My top two priorities right now are:
1. Get rid of the cancer that's in me now.
2. Reduce the risk of cancer coming back.
Even with a double mastectomy, my NP says there's still a 1-3% chance of recurrence. It's not 0%, but if that's the lowest possible risk, I'll take it.
Secondary to reducing my risk of recurrence and increasing my peace of mind was considering my self-image. It's hard to know how you would feel in a situation until you are actually in it, but the idea of being "lopsided" actually makes me feel more uneasy than the idea of just being symmetrically flat. I'm not worried about questioning looks or judgmental comments, I'm sure to get those either way.
With a single mastectomy, I could still opt for reconstruction or wear a prosthetic, but from what I gather, they don't always look symmetric anyway. It would just be one more thing to worry about before leaving the house, like, "Do my boobs look even?" And for someone who already doesn't prioritize fashion or style or appearances in general, it just seems like something I'd rather not worry about.
One thought that did occur to me was, if I were younger, and still planned on having children, I would absolutely want to keep my left breast in the hopes of breastfeeding any future babies. But I don't plan on having any more kids. I appreciate that I was able to breastfeed both my kids, and I feel like my breasts have served me well. It's okay if they have to be removed. Like one of my aunts pointed out, a breast is not a vital organ.
So, interestingly, I find myself having kind of a Marie Kondo type attitude. Haha. Due to the cancer, my breasts no longer spark joy for me. Before getting rid of them, I am thanking them for having served their purpose.
9/5/19 Update: After my surgery, the surgical pathology found cancer in my left breast, validating my decision to have a double mastectomy!
Saturday, July 13, 2019
Friday, July 12, 2019
7/12/19: Phone Calls + Medical Records + Diet and Exercise Recommendations
I called the Breast Imaging location to cancel my annual screening mammogram, which was on the calendar from being scheduled months ago, before all this happened. No breasts means no more mammograms for me!
I called my insurance company to ask if I needed to do anything for them in advance of my surgery. They confirmed that they have my breast surgeon referral on file, and it's the doctor who handles submissions for any authorizations that are needed.
At the suggestion of one of my cousins, I logged into my online patient portal intending to print out any official medical records related to my cancer. All the information I've gotten so far has been verbal, and it just seems like maybe it would be a good idea to have actual reports. But for some reason, the only records I could see online were ones related to my PCP.
I poked around on the internet and realized that even though my PCP's practice is a division of the parent hospital, there are actually two separate online patient portal systems, one for PCP practices, and one for the main hospital. I went through the steps to register for a main hospital account, which apparently takes 5-10 business days to be processed.
Meanwhile, in between figuring out the patient portal sites, I put a call in to my nurse navigator asking how I could get copies of my records. By the time she called me back, I had discovered the main hospital portal site. I said hopefully that account will give me the access I'm looking for. But since that might take up to 2 weeks, the nurse said she'd go ahead and mail me what's in my medical file already. She mentioned that she didn't see my genetic testing results in my file, so she'd follow up with the genetic counselor about that.
I also got a call today from a very dear friend who I've known for about 30 years. She's a dietitian, and has worked on clinical studies with breast cancer patients. She gave me some helpful advice on diet and exercise.
Regarding diet: Studies show that eating a low-fat diet can reduce recurrence rates, but it's not clear if that's due to eating more fruits and vegetables, or eating less junk food, or losing weight overall, or what. Without knowing exactly what has the most benefit, general recommendations include eating a more plant-based diet, minimizing consumption of red meat and processed foods, and eating whole grains. Okay, I can do that.
Regarding exercise: A recent study showed that 30 minutes of "moderate" walking 5 times per week can reduce breast cancer recurrence by 40%. (My friend said "moderate" is like walking at a pace where you can talk but can't sing.) I can do that, too!
I called my insurance company to ask if I needed to do anything for them in advance of my surgery. They confirmed that they have my breast surgeon referral on file, and it's the doctor who handles submissions for any authorizations that are needed.
At the suggestion of one of my cousins, I logged into my online patient portal intending to print out any official medical records related to my cancer. All the information I've gotten so far has been verbal, and it just seems like maybe it would be a good idea to have actual reports. But for some reason, the only records I could see online were ones related to my PCP.
I poked around on the internet and realized that even though my PCP's practice is a division of the parent hospital, there are actually two separate online patient portal systems, one for PCP practices, and one for the main hospital. I went through the steps to register for a main hospital account, which apparently takes 5-10 business days to be processed.
Meanwhile, in between figuring out the patient portal sites, I put a call in to my nurse navigator asking how I could get copies of my records. By the time she called me back, I had discovered the main hospital portal site. I said hopefully that account will give me the access I'm looking for. But since that might take up to 2 weeks, the nurse said she'd go ahead and mail me what's in my medical file already. She mentioned that she didn't see my genetic testing results in my file, so she'd follow up with the genetic counselor about that.
I also got a call today from a very dear friend who I've known for about 30 years. She's a dietitian, and has worked on clinical studies with breast cancer patients. She gave me some helpful advice on diet and exercise.
Regarding diet: Studies show that eating a low-fat diet can reduce recurrence rates, but it's not clear if that's due to eating more fruits and vegetables, or eating less junk food, or losing weight overall, or what. Without knowing exactly what has the most benefit, general recommendations include eating a more plant-based diet, minimizing consumption of red meat and processed foods, and eating whole grains. Okay, I can do that.
Regarding exercise: A recent study showed that 30 minutes of "moderate" walking 5 times per week can reduce breast cancer recurrence by 40%. (My friend said "moderate" is like walking at a pace where you can talk but can't sing.) I can do that, too!
Thursday, July 11, 2019
7/11/19: The Breast Center Called Me with a Surgery Date
Finally!
My surgery will be Friday, August 23. That was the first available date.
I'm disappointed because I was very much hoping for a date in early August, so that my husband (a public school teacher) could be home for the duration of my recovery, and so I could be fully recovered before school starts.
I consider this date "the worst of the best" options. My husband and the kids start school the week of August 26, so this date is the last possible date that falls during summer vacation. That's the good part; at least the surgery itself isn't during the school year. The unfortunate part is that our household is obviously much busier when school is in session, especially at the beginning when we're still getting into a routine, and I will be out of commission, including no driving, for at least a few weeks.
I also just really want this cancer out of me. I mean, coming to terms with a double mastectomy is difficult, to say the least. But at least one of my breasts is literally trying to kill me, so at this point, I really just want them gone.
Tuesday, July 9, 2019
7/9/19: I Cancelled the MRI with Biopsy Appointment
Hm.
At the breast surgeon appointment, my nurse navigator said she would cancel my MRI with biopsy appointment for me. (Since we decided on a double mastectomy, and both breasts would be tested, a biopsy of the left breast before surgery is no longer needed.)
But yesterday, I received in the mail a letter confirming my MRI appointment, scheduled for tomorrow. Maybe the letter was prepared before my nurse had a chance to cancel the appointment?
I called the radiology department to confirm my appointment was cancelled. The scheduler said my appointment was still there! She asked if I wanted to cancel it, and I said yes.
For my own sanity, I confirmed with my husband that both the breast surgeon and the nurse said the appointment was no longer needed, and that the nurse said she would handle the cancellation. I guess I'm a little troubled that this fell through the cracks - what else might also fall through the cracks then? - but my husband said cancelling appointments is probably low on the nurse's priority list.
Meanwhile, I am still waiting for the phone call telling me when my surgery will be. We have lots of summer plans that have been thrown up in the air until we find out the surgery date. I feel super anxious, and just want to have a known schedule.
At the breast surgeon appointment, my nurse navigator said she would cancel my MRI with biopsy appointment for me. (Since we decided on a double mastectomy, and both breasts would be tested, a biopsy of the left breast before surgery is no longer needed.)
But yesterday, I received in the mail a letter confirming my MRI appointment, scheduled for tomorrow. Maybe the letter was prepared before my nurse had a chance to cancel the appointment?
I called the radiology department to confirm my appointment was cancelled. The scheduler said my appointment was still there! She asked if I wanted to cancel it, and I said yes.
For my own sanity, I confirmed with my husband that both the breast surgeon and the nurse said the appointment was no longer needed, and that the nurse said she would handle the cancellation. I guess I'm a little troubled that this fell through the cracks - what else might also fall through the cracks then? - but my husband said cancelling appointments is probably low on the nurse's priority list.
Meanwhile, I am still waiting for the phone call telling me when my surgery will be. We have lots of summer plans that have been thrown up in the air until we find out the surgery date. I feel super anxious, and just want to have a known schedule.
Tuesday, July 2, 2019
7/2/19: I Checked My Insurance Claims Online
After getting that MRI bill, I wondered why I hadn't been charged for ALL those appointments and tests in May and June...
I logged into my online account for my health insurance. It looks like, since I reached my personal deductible already, my insurance is paying all claims in full.
Usually we get an insurance statement that tells us the full charge, how much the insurance will pay, and how much we should expect to be billed by the provider and/or hospital. But maybe they won't send us a statement if our expected charge is $0?
It does look like we should expect to be billed for some office visit co-pays, which I don't remember being asked to pay on the day of the appointments...
Below I am listing all the new claims so far. Unless otherwise noted, we paid $0. Apparently, this is how much it costs to have breast cancer in America.
(Incidentally, our insurance coverage changed on July 1. Our deductible balance was re-set, and our new plan has a lot of up-front costs before insurance kicks in. So I expect we'll have more to pay starting with the breast surgeon appointment.)
5/13/19: Mammogram & Ultrasound Hospital: $857
5/13/19: Mammogram & Ultrasound Radiologist: $246
5/16/19: NP Appointment: $422 (I owe $20 co-pay.)
6/4/19: MRI Radiologist: $377
6/4/19: NP Appointment: $83 (I owe $20 co-pay.)
6/13/19: Biopsy Hospital: $3,074.54
6/13/19: Biopsy Pathologist: $256
6/13/19: Biopsy Pathologist: $858 (Separate charges for each sample?)
6/13/19: Biopsy Hospital (Pathology Lab?): $2,420
6/17/19: Hospital (Pathology Lab?): $650 (Presumably related to biopsy.)
6/20/19: Mammogram & Ultrasound Hospital: $791
6/20/19: Mammogram & Ultrasound Radiologist: $370
6/20/19: Genetic Counselor Appointment: $212 (I owe $60 co-pay.)
6/20/19: Genetic Testing: $1,500
Sub-total: $12,116.54
With insurance, cost to me: $100
Total cost to date: $17,724.22
With insurance, cost to me: $520
Notably, this current total reflects only my diagnosis. I haven't even received any treatment yet!
I logged into my online account for my health insurance. It looks like, since I reached my personal deductible already, my insurance is paying all claims in full.
Usually we get an insurance statement that tells us the full charge, how much the insurance will pay, and how much we should expect to be billed by the provider and/or hospital. But maybe they won't send us a statement if our expected charge is $0?
It does look like we should expect to be billed for some office visit co-pays, which I don't remember being asked to pay on the day of the appointments...
Below I am listing all the new claims so far. Unless otherwise noted, we paid $0. Apparently, this is how much it costs to have breast cancer in America.
(Incidentally, our insurance coverage changed on July 1. Our deductible balance was re-set, and our new plan has a lot of up-front costs before insurance kicks in. So I expect we'll have more to pay starting with the breast surgeon appointment.)
5/13/19: Mammogram & Ultrasound Hospital: $857
5/13/19: Mammogram & Ultrasound Radiologist: $246
5/16/19: NP Appointment: $422 (I owe $20 co-pay.)
6/4/19: MRI Radiologist: $377
6/4/19: NP Appointment: $83 (I owe $20 co-pay.)
6/13/19: Biopsy Hospital: $3,074.54
6/13/19: Biopsy Pathologist: $256
6/13/19: Biopsy Pathologist: $858 (Separate charges for each sample?)
6/13/19: Biopsy Hospital (Pathology Lab?): $2,420
6/17/19: Hospital (Pathology Lab?): $650 (Presumably related to biopsy.)
6/20/19: Mammogram & Ultrasound Hospital: $791
6/20/19: Mammogram & Ultrasound Radiologist: $370
6/20/19: Genetic Counselor Appointment: $212 (I owe $60 co-pay.)
6/20/19: Genetic Testing: $1,500
Sub-total: $12,116.54
With insurance, cost to me: $100
Total cost to date: $17,724.22
With insurance, cost to me: $520
Notably, this current total reflects only my diagnosis. I haven't even received any treatment yet!
7/2/19: I Got Billed for the MRI
Just as I was told on the phone, I was charged only $100 for the MRI.
6/4/19: MRI Hospital: $4,274.68
With insurance, I paid: $100
Total cost to date: $5,607.68
With insurance, cost to me: $420
6/4/19: MRI Hospital: $4,274.68
With insurance, I paid: $100
Total cost to date: $5,607.68
With insurance, cost to me: $420
Monday, July 1, 2019
7/1/19: Breast Surgeon Appointment
I feel a lot better now that we've met with the breast surgeon! My husband went with me to this appointment, and it feels good to have a plan.
We covered so much information in this appointment. Here goes.
I will be getting a double mastectomy with no reconstruction. He will also remove 2-3 sentinel lymph nodes on each side for testing. (More details on that below.) The earliest available surgery date is likely to be in mid-August, but they will put me on a wait list for an earlier date. They will call me probably next week with the surgery date.
It sounded like the surgeon got involved starting with my MRI report. He asked me to fill him in on everything up until the MRI. I dare say he expressed a bit of surprise when he learned that two mammograms and two ultrasounds did not detect either of my cancerous tumors. He said maybe the sebaceous cyst was like my guardian angel, causing me to pay more attention to my breast and leading me to an earlier diagnosis. (Incidentally, at this point, the sebaceous cyst is no longer visible, and the palpable lump is much, much smaller. I'm not even sure if what I'm feeling is the cyst, or the cancer...)
He said the biopsy of my 1st lump showed both cancer and necrotic tissue. This is the only part of the appointment I didn't quite understand. What is the significance of the necrotic tissue? He didn't seem too worried about it, and what he did say was pretty much in line with this.
He called my cancer "invasive carcinoma with ductal and lobular features." I think the 1st area (the cancer behind the sebaceous cyst) is in the lobules (milk-producing glands), and the 2nd area (the cancer near my nipple) is in the milk ducts.
He said I am HER2 negative, which is a good thing. He said HER2 is a growth factor, and the fact that I am negative means maybe I will not need chemotherapy.
I am also 90% ER+ (estrogen receptor positive), which means I should respond well to hormone therapy.
Putting it all together, he said I am stage 1. But he emphasized that much more will be known after the surgery.
The surgeon confirmed that because the cancer is multicentric, a full mastectomy of my right breast is recommended. He said at this point, the two lumps look like 2 separate tumors, but during the surgery they may be able to see if the two are actually connected (which means there was 1 tumor that spread).
Contrary to what the genetic counselor had said, he thought the "variants of unknown significance" were very important. The fact that they are "unknown" means they could, possibly, be 100% linked to breast cancer, but we just don't know that yet. Those variants, combined with the history of cancer in my family (2 paternal aunts with breast cancer), and also considering the unknown abnormality seen in the MRI of my left breast, means a double mastectomy would be a reasonable course of action. I agreed. After surgery, both breasts will be sent to the lab for testing, so ultimately we will know if there really was cancer in the left breast already.
During the surgery, it is customary to look at the lymph nodes to see if the cancer has spread. Apparently, if breast cancer spreads outside of the breasts, the only path is through the lymph nodes. The surgeon will eject a dye into each breast. The dye will travel the same path the cancer would be likely to take. The first lymph nodes to be reached by the dye are called the "sentinel" lymph nodes. (Like they are keeping guard for the rest of the body!) The surgeon will remove 2 or 3 of these sentinel lymph nodes on each side for biopsy. Even though there is no confirmation of cancer in the left breast at this point, he will remove the left sentinel lymph nodes just in case, because once the breast is removed, there will be no way to identify the sentinel lymph nodes for future biopsy (no breast tissue in which to inject the dye).
Whether or not the sentinel lymph node biopsy shows cancer may change the staging of the cancer and will determine my course of treatment, including whether or not I need chemotherapy.
After surgery, when all the lab results are in, I will meet with a medical oncologist about chemotherapy and medication, which are considered systemic treatments for cancer. (They treat the whole body, not just the location of the cancer.)
Because my cancer is ER+, the medical oncologist may prescribe an anti-estrogen pill like Tamoxifen, which is appropriate for pre-menopausal women. Ovarian suppression pills could also be used to prevent the ovaries from producing estrogen. Being 90% sensitive to estrogen, I asked if I should consider getting my ovaries removed? He said that's definitely something I should discuss with the medical oncologist and my OB/GYN. (Ovary removal surgery would be done by the OB/GYN.)
If necessary, I will be referred to a radiation oncologist. Radiation (like surgery) is considered local treatment for cancer tumors. A mastectomy removes the entire area of the tumor, which makes radiation less likely.
The breast surgeon said radiation is rare for a stage 1 cancer with double mastectomy. But radiation could be recommended if the tumor is greater than 5 cm, if the cancer has already spread to the lymph nodes, or if there are "positive margins". "Surgical margins" refers to the normal breast tissue that is removed along with the cancer. "Clear" or "negative" margins means normal tissue surrounds the removed cancer. "Positive" margins means cancer cells go right up to the end of the removed tissue (which means maybe not all the cancer was removed).
Because I am not getting reconstruction, I also spoke with the breast surgeon about wanting completely flat results, i.e., no excess skin or "dog ears". (If breast reconstruction is still a possibility, surgeons may purposely spare excess skin.) He said he understood my concern, and if there are "poor cosmetic results" after recovery, either he or a plastic surgeon could do revision surgery (a "quick nip-tuck" outpatient procedure) to fix it.
The breast surgeon offered to refer me to a plastic surgeon if I changed my mind about reconstruction. I appreciated that he was making sure I understood all my options while still respecting my decision and not pushing me in one direction or the other.
He also let me know about contoured prosthetics that are custom-made to fit an individual's chest, so they fit and look better than other prosthetics. I haven't given much thought to prosthetics yet, but that does sound appealing. He said he'd get me the information for them (maybe a prescription?) after the surgery.
Regarding the post-surgery recovery, he said I could expect 1 night in the hospital, and then I should be functional by the time I get home. I shouldn't do any cooking or cleaning or anything like that for about a week. He estimated recovery to be 3 weeks, but no heavy lifting for up to 6 weeks. He told me about "drains" that will collect fluid in the days following surgery. (They will be removed after 5-7 days.) I think I would have been more taken aback or confused by this revelation if I hadn't already learned about drains on the Facebook group for women who have had double mastectomies.
Finally, we met briefly with my biopsy nurse, who I learned is my "navigator," which means she is the person coordinating my care. She will take care of cancelling the MRI with biopsy appointment, and she'll be the one who sets up my medical oncologist appointment. I mentioned to her my uneasiness over the fact that I had taken birth control pills for so many years. She reassured me that no studies definitively link birth control pills to breast cancer; birth control pills may slightly increase the risk for breast cancer for some women, but there are many factors that may influence the results.
Now, all I can do is wait for a scheduler to call with my surgery date.
We covered so much information in this appointment. Here goes.
I will be getting a double mastectomy with no reconstruction. He will also remove 2-3 sentinel lymph nodes on each side for testing. (More details on that below.) The earliest available surgery date is likely to be in mid-August, but they will put me on a wait list for an earlier date. They will call me probably next week with the surgery date.
It sounded like the surgeon got involved starting with my MRI report. He asked me to fill him in on everything up until the MRI. I dare say he expressed a bit of surprise when he learned that two mammograms and two ultrasounds did not detect either of my cancerous tumors. He said maybe the sebaceous cyst was like my guardian angel, causing me to pay more attention to my breast and leading me to an earlier diagnosis. (Incidentally, at this point, the sebaceous cyst is no longer visible, and the palpable lump is much, much smaller. I'm not even sure if what I'm feeling is the cyst, or the cancer...)
He said the biopsy of my 1st lump showed both cancer and necrotic tissue. This is the only part of the appointment I didn't quite understand. What is the significance of the necrotic tissue? He didn't seem too worried about it, and what he did say was pretty much in line with this.
He called my cancer "invasive carcinoma with ductal and lobular features." I think the 1st area (the cancer behind the sebaceous cyst) is in the lobules (milk-producing glands), and the 2nd area (the cancer near my nipple) is in the milk ducts.
He said I am HER2 negative, which is a good thing. He said HER2 is a growth factor, and the fact that I am negative means maybe I will not need chemotherapy.
I am also 90% ER+ (estrogen receptor positive), which means I should respond well to hormone therapy.
Putting it all together, he said I am stage 1. But he emphasized that much more will be known after the surgery.
The surgeon confirmed that because the cancer is multicentric, a full mastectomy of my right breast is recommended. He said at this point, the two lumps look like 2 separate tumors, but during the surgery they may be able to see if the two are actually connected (which means there was 1 tumor that spread).
Contrary to what the genetic counselor had said, he thought the "variants of unknown significance" were very important. The fact that they are "unknown" means they could, possibly, be 100% linked to breast cancer, but we just don't know that yet. Those variants, combined with the history of cancer in my family (2 paternal aunts with breast cancer), and also considering the unknown abnormality seen in the MRI of my left breast, means a double mastectomy would be a reasonable course of action. I agreed. After surgery, both breasts will be sent to the lab for testing, so ultimately we will know if there really was cancer in the left breast already.
During the surgery, it is customary to look at the lymph nodes to see if the cancer has spread. Apparently, if breast cancer spreads outside of the breasts, the only path is through the lymph nodes. The surgeon will eject a dye into each breast. The dye will travel the same path the cancer would be likely to take. The first lymph nodes to be reached by the dye are called the "sentinel" lymph nodes. (Like they are keeping guard for the rest of the body!) The surgeon will remove 2 or 3 of these sentinel lymph nodes on each side for biopsy. Even though there is no confirmation of cancer in the left breast at this point, he will remove the left sentinel lymph nodes just in case, because once the breast is removed, there will be no way to identify the sentinel lymph nodes for future biopsy (no breast tissue in which to inject the dye).
Whether or not the sentinel lymph node biopsy shows cancer may change the staging of the cancer and will determine my course of treatment, including whether or not I need chemotherapy.
After surgery, when all the lab results are in, I will meet with a medical oncologist about chemotherapy and medication, which are considered systemic treatments for cancer. (They treat the whole body, not just the location of the cancer.)
Because my cancer is ER+, the medical oncologist may prescribe an anti-estrogen pill like Tamoxifen, which is appropriate for pre-menopausal women. Ovarian suppression pills could also be used to prevent the ovaries from producing estrogen. Being 90% sensitive to estrogen, I asked if I should consider getting my ovaries removed? He said that's definitely something I should discuss with the medical oncologist and my OB/GYN. (Ovary removal surgery would be done by the OB/GYN.)
If necessary, I will be referred to a radiation oncologist. Radiation (like surgery) is considered local treatment for cancer tumors. A mastectomy removes the entire area of the tumor, which makes radiation less likely.
The breast surgeon said radiation is rare for a stage 1 cancer with double mastectomy. But radiation could be recommended if the tumor is greater than 5 cm, if the cancer has already spread to the lymph nodes, or if there are "positive margins". "Surgical margins" refers to the normal breast tissue that is removed along with the cancer. "Clear" or "negative" margins means normal tissue surrounds the removed cancer. "Positive" margins means cancer cells go right up to the end of the removed tissue (which means maybe not all the cancer was removed).
Because I am not getting reconstruction, I also spoke with the breast surgeon about wanting completely flat results, i.e., no excess skin or "dog ears". (If breast reconstruction is still a possibility, surgeons may purposely spare excess skin.) He said he understood my concern, and if there are "poor cosmetic results" after recovery, either he or a plastic surgeon could do revision surgery (a "quick nip-tuck" outpatient procedure) to fix it.
The breast surgeon offered to refer me to a plastic surgeon if I changed my mind about reconstruction. I appreciated that he was making sure I understood all my options while still respecting my decision and not pushing me in one direction or the other.
He also let me know about contoured prosthetics that are custom-made to fit an individual's chest, so they fit and look better than other prosthetics. I haven't given much thought to prosthetics yet, but that does sound appealing. He said he'd get me the information for them (maybe a prescription?) after the surgery.
Regarding the post-surgery recovery, he said I could expect 1 night in the hospital, and then I should be functional by the time I get home. I shouldn't do any cooking or cleaning or anything like that for about a week. He estimated recovery to be 3 weeks, but no heavy lifting for up to 6 weeks. He told me about "drains" that will collect fluid in the days following surgery. (They will be removed after 5-7 days.) I think I would have been more taken aback or confused by this revelation if I hadn't already learned about drains on the Facebook group for women who have had double mastectomies.
Finally, we met briefly with my biopsy nurse, who I learned is my "navigator," which means she is the person coordinating my care. She will take care of cancelling the MRI with biopsy appointment, and she'll be the one who sets up my medical oncologist appointment. I mentioned to her my uneasiness over the fact that I had taken birth control pills for so many years. She reassured me that no studies definitively link birth control pills to breast cancer; birth control pills may slightly increase the risk for breast cancer for some women, but there are many factors that may influence the results.
Now, all I can do is wait for a scheduler to call with my surgery date.
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