6/24/22: (8 Days Post-BSO) Incision Check Appointment

For the record, Tuesday was the first day I didn't take any ibuprofen.

My left incision continues to be the limiting factor of my recovery. The bruise is huge so I know it will take time to go away. The colors seem to be changing from dark purple to light purple and green, so I think that's a good sign. When I walk, it's that left incision that causes discomfort and makes me walk slower and a bit hunched over, with my left hand supporting the incision area. 

All that's fine, but last night I noticed a small, firm lump at the left incision site. I don't know if it was something new, or if I had previously assumed it was just part of the bruise-related swelling, but last night it felt separate from the bruise. 

First thing this morning I called the GYN surgeon's office and described both the bruise and the bump. The same nurse who called me last week gave me a call back. She said because it's Friday and we're going into the weekend, it would probably be good to "get eyes on it", so she scheduled me in for an appointment later this morning. I was so thankful and relieved because I definitely wanted someone to look at the bruise and feel the lump. Also, luckily, the doctor happened to be in the office today, so the nurse said the doctor could even take a look herself. 

After checking in, I met the nurse, who was just as friendly in person and really had a vibe of wanting to help. There was also a second nurse, who I assume was a student. The friendly nurse had me lie down on the examining table, and she looked at the bruise and bump. Most surprisingly, she also commented on "this other bruise" on my pubic bone. (Sorry for the TMI.) I had not even noticed this bruise! I couldn't tell them when it appeared. It doesn't hurt, and I guess I just didn't look down there.

She asked me a lot of questions to make sure there were no other complications, and then she left to get the doctor.

The most important thing is that the doctor used the words "not worried". I'm a big worry-wart, so I latched onto those words for reassurance. 

While the doctor was examining the bruise and feeling the bump, the nurse removed the Steri-Strips on both the left and right incisions. (The bellybutton only had the dressing that I removed before showering on Saturday, no Steri-Strips.)

First, the doctor said that she's not surprised that the left incision area is bruised because that incision was bigger (about 1 cm instead of 0.5 cm), and it sounded like that side took more of a beating. (My words, not hers.) She did seem surprised that the bruise was so large; end-to-end it's about as long as my hand. 

She was perplexed about the bruise on the pubic bone, though. She said no part of the surgery extended down that far, so she didn't know why that area would get bruised. She speculated that maybe some internal blood flowed from the big bruise downward, but there was no other bruising in between that might have supported that theory. The nurse used a skin marker to outline the edge of this bruise. I should keep an eye on it, and call the office again if it gets bigger. 

The doctor asked if I bruise easily, and I said I don't know, but maybe, because I do remember bruising when I got a biopsy, and it's not frequent, but also not unusual, for me to bruise up when I get my blood drawn. She guessed that maybe if I bruise easily, even the smallest trauma could cause one. In any case, there's not much that can be done about the bruises, just let them heal on their own, which can take a couple weeks. 

Regarding the lump, the doctor seemed very confident that it's scar tissue. She said it may take a couple months to go away, though many sites online suggest scar tissue might never go away. I asked if I should massage the site, and she said it can help, but it's not something I should do until later, after the incision is fully healed. 

They also advised me to ice the left incision, I think to help reduce the swelling. For the same reason, the student nurse suggested I start taking ibuprofen again; even if I don't need it for pain, it's also an anti-inflammatory drug, so it can help reduce the swelling around the bruise. 

At this point, it seemed like the next course of action is just to monitor the bump and bruises, and call back if they seem to be getting worse, like if they become bigger or more painful, or if I get any signs of infection, like a fever. I said I might be taking a trip this summer, and I'm worried that I'll be out of the state when something goes terribly wrong. This is when the doctor said she's "not worried", and said recovery will just take some time.

The two nurses said I just need to be patient and let my body heal. I should listen to my body and not overdo it. It's frustrating because of the "laparoscopic surgery is easy" narrative, but my nurse pointed out that it's still surgery, so I should keep in mind 6-8 weeks as the full, back-to-normal recovery timeframe.

6/17/22: (1 Day Post-BSO) The GYN Surgeon's Office Called Me

Yesterday the PACU nurse told me to expect a call today from my surgeon's office.

The nurse set my mind at ease about the large bruise on my left incision. She said it's typical and not to worry unless it gets worse rather than better. 

She also clarified instructions I had about my Steri-Strips. I should take the dressing off before showering on Saturday (2 days after surgery), and leave uncovered until the strips fall off on their own, but if they haven't come off in 2 weeks, then I can gently help them off while in the shower. 

She was very nice, but I don't feel like she was particularly knowledgeable or attentive. I mentioned having excess mucus in my lungs that is difficult to cough up. She recommended holding a pillow to my incisions when trying to cough, but otherwise said to treat the cough as I would normally, like with cough drops. She did not address the mucus build-up, and when I later looked at her notes in the online patient portal, she said I had a "dry cough"! 

I also mentioned that if there's excess mucus in my nose, and I try to sniff it up, it actually hurts my lungs/chest, and that it feels especially good when I take deep breaths. I was hoping she would respond with deep breathing exercises, which are highlighted in articles about BSO recovery and surgery recovery in general, but she didn't. I will just continue with the deep breathing anyway.

When I described my shoulder pain, she said it was probably from being placed in an uncomfortable position during surgery. She did not attribute it to the gas pumped into my abdomen during surgery, which was the explanation offered by the PACU nurse and also these articles about BSO surgery.

She did remind me to drink a lot of fluids, and to walk around to help relieve constipation. Mostly she wanted to make sure I knew when to call the doctor, like if I have heavy bleeding, increasing pain, or signs of infection.  

I also scheduled my follow-up appointment, which will be in 3.5 weeks.

I have to say, a lot of people, including many in Facebook support groups, made it sound like recovering from an oophorectomy is easy-peasy compared to a double mastectomy. I mean, sure, it's relatively easier, but I still think it's objectively difficult. Presumably the recovery time will be shorter (about 1-2 weeks), but during that time, there's still plenty of pain and discomfort to manage.

6/16/22: Bilateral Salpingo-Oophorectomy (BSO) Surgery

I feel pretty fortunate that I've been so pleased with the care I've gotten from my hospital network, and today was no exception. It really felt like they were taking good care of me. My post-op nurse especially made me feel like I was in good hands.

We arrived at 6:00 AM for my 7:30 AM surgery time. Actually, we arrived a bit early, and saw 2 other cars with patients waiting inside. Apparently, the entrance doesn't even open until 6:00 AM. 

When I had my pre-operative phone call, the nurse had told me that I would not be allowed to wear an outside mask, and I'd have to swap it out for the hospital-provided surgical mask. Since I always wear a KF94, I was worried I'd have to downgrade my mask, a problem that has happened in other hospitals. But I just quietly put the surgical mask on top of my KF94, and nobody stopped me or said anything. 

I had a short wait, then was taken to a pre-op room. I changed into a gown, and a nurse took my vitals and put an IV in my left hand. She also had me take 2 Tylenol to get a jump on pain relief. I've been trying to steer clear of Tylenol to help my liver situation, but figured it'd be okay to take a few doses for surgery.

One of the anesthesiologists, as she read through my medical notes and asked me questions, paused and said one sentence that actually meant a lot to me: "I'm sorry you've had to go through all this." I've seen a LOT of healthcare workers outside oncology, including imaging technicians and staff from cardiology, hepatology, GYN, and my PCP's office. Every time my medical history is reviewed, the person is generally kind and professional, but they have always stopped short of being compassionate or acknowledging that all the cancer treatment and complications might actually be taking some kind of toll on me - until today. I don't blame them, and I understand the need to stay objective and even stoic, but just having a medical professional look at my history and validate that it is a lot for someone to go through was comforting. (I should mention that my entire oncology team has always shown compassion and understanding, that's just one of many reasons why I appreciate them.)

Anyway. I got the anesthesia. One second I'm sitting in the hospital bed, being transported to the operating room, not even feeling drowsy, and then bam, the next thing I know, I'm feeling groggy in a post-op recovery bay.

There was no clock in my pre-op room, so I don't know if the surgery started on time at 7:30 AM. The GYN surgeon had estimated 1 hour, but Ken said she called him around 9:15. I don't know if we started late or if the surgery took longer than expected, but she said everything went fine. Ken said the surgeon told him I'd be ready for pick-up in about an hour, but I didn't get discharged until roughly 2 hours later, around 11:15. 

When I woke up, I noticed right away that I didn't have a mask on. I figured it was okay because I was in my own bay, my nurse was masked, and she had set out some water, apple juice, and biscuit-type cookies for me. Once I finished eating and drinking, I asked for my glasses, took a new mask out of my bag at the same time, and looked at the clock.

It was just after 10:30 AM, so I think I must have woken up around 10:15 AM. I'm guessing I stayed under longer than the GYN surgeon anticipated. I was in the PACU (Post Anesthesia Care Unit) for about an hour, with a dedicated nurse.

There was an ice pack on my abdomen, covering the three incision areas. Also, there were inflatable sleeves on my calves, I assume to prevent blood clots.

The nurse warned me that my shoulders might hurt, a consequence of air being pumped into my abdomen during surgery, to make room for the surgeon to perform the procedure! I don't see how air in the abdomen affects the shoulders, but indeed, my right shoulder started to ache in the car ride home, and later my left shoulder started to ache too. In fact, the pain in my shoulders made it very difficult for me to sleep that night. This very helpful page about BSO surgery says the shoulder pain should go away in a few days, and walking around will help.

Also, presumably because of that air (actually, I later saw in my online medical notes that it was carbon dioxide) my belly felt bloated.  The bloating caused a lot of discomfort and was also a factor in not sleeping well.

On the drive home, I used a small pillow to cushion my abdomen from the seat belt, a trick the pre-operative phone call nurse had recommended.

The anesthesia definitely hit me harder this time than when I had my double mastectomy. I was still groggy and nauseated when I was discharged, and it took several hours to go away. I even threw up as soon as I got home. (The nurse had anticipated this and had given me a barf bag for the ride home, though it was labeled "emesis bag," so I learned a new word!)

Once I was home and settled into bed, I noticed the area around my left incision was bruised, which was a new development. The bruise was about 4 inches across and dark purple. The PACU nurse hadn't warned me about that, so I was relieved to find bruising mentioned on this BSO informational page. She did give me 2 cold compresses, which I promptly put to work over the incisions.

Walking is difficult, but since walking helps the recovery process in many ways, I've been making an effort to get up and putter around the house a bit. 

After a while, I noticed an increase in mucus in my lungs. Moreover, it's hard to cough up because coughing makes my incisions hurt. I found this web page that says anesthesia can hamper normal breathing and cause mucus to build up in the lungs. Moving around and coughing should help. Interestingly, both the Memorial Sloan Kettering Cancer Center and the WebMD web sites mention an "incentive spirometer," but I didn't get one. I found this laparoscopic oophorectomy informational page that mentions "breathing exercises", then finally found a related page describing specific breathing, coughing, and leg exercises that I can do.

Overall, I'm doing alright. I am taking prescription-strength ibuprofen (600 mg), which keeps pain at bay as long as I take it on schedule. I've also been taking prescription-strength generic Colace (100 mg) to help with constipation. I can walk around slowly, standing a little hunched over. The only other thing worth mentioning is that it feels kind of hard to talk, like I have to talk slowly; I figure it's somehow related to the bloating and/or mucus in the lungs, and needing to take deep breaths.

6/3/22: Pre-Operative Phone Call

Mostly this phone call was about reviewing my medical history. The nurse asked me a bunch of yes/no questions about my health.

She gave me a few instructions on where to report and what to expect on the day of surgery. She also said I should expect another phone call the day before surgery with final instructions, like food and drink restrictions. 

Disappointingly, she said no outside masks are allowed in the hospital, so when I check in, I'll be given a new surgical mask. The fact that I will be required to swap out my high-quality KF94 mask for a lower quality surgical mask is unfortunate but not surprising, as I have heard this to be the policy in many, many hospitals. Maybe I should feel lucky that all my other appointments up until now have allowed me to wear a KF94.

Interestingly, she asked if I'll be seeing my doctor before the surgery, because apparently I need "medical clearance". I don't have a PCP appointment scheduled, but I do happen to have a regularly scheduled appointment with my medical oncology NP. She told me to call the NP's office and let them know I'll need "medical clearance" from this appointment. I have no idea what this "medical clearance" is but I just followed instructions and called the Cancer Center and left a message.

Finally, I'm not supposed to take any vitamins for 7 days before surgery. This is not a big deal at all, but I just didn't realize taking vitamins would matter.

10/30/20: Lupron

Got my monthly shot. Nothing too exciting there.

The steri-strips over my port removal incision still haven't come off. It's been almost a month. The discharge papers say the strips will fall off on their own, but don't say how long it should take. Google tells me they usually fall off in about 2 weeks, but my nurse today said it's okay if they take 4-6 weeks. She suggested I could help them along a little by gently washing the area with a washcloth in the shower. I'll do that; so far I've just been letting soapy water run over them.

I also decided to show the nurse the tick bite I got last Saturday. I walk in the area behind my house, and there's a short path through some light woods. I was wearing long sleeves and long pants (though the top wasn't tucked in), and I certainly didn't rub up against any branches or leaves. So this means a tick somehow fell on me, and crawled on my clothes and body until it found a spot on my waist to bite. Ugh! Gross. I'm not even sure if the tick bit me on Friday or Saturday, but I found it on Saturday. Ken pulled it out with tweezers. There was a tiny hole where the tick was, a small dark purple dot around the hole, and then a larger red patch around that. I've taken pictures of it almost every day since, and it looks like it's getting better, but I figured I'd show the nurse just in case. I showed her the photos and she agreed it looks like it's improving. She said to watch out for fever, chills, warmth in the area, and a growing rash. If I get any symptoms, I should contact my PCP.

8/29/19: Phone Calls

I called my nurse today.

First, I wanted to see about getting an appointment with a medical oncologist. This is the doctor who will provide further treatment if I need chemotherapy, radiation, or hormone therapy. She said to expect a call today or tomorrow to schedule the appointment. I did receive a call later in the day, and I now have an appointment on the calendar.

I also asked if the Breast Center is open on Labor Day Monday, because I am expecting my drains to meet the requirement for removal (less than 30 mL each for 2 consecutive days) over the weekend. She confirmed they are closed on Labor Day, but also said my breast surgeon actually prefers the drain output to be less than 20 mL each for 2 consecutive days, so the long weekend probably won't be a problem.

8/28/19: The Nurse Called Me with Pathology Results - "Clean as a Whistle!"

SO RELIEVED!!!!!!!!!!!!!!!!

The nurse called me on my cell phone, but I didn't answer because the number was "PRIVATE". Previously, all phone calls from the hospital had come through with a phone number!! Grrr.

I tried to transcribe her message. I must have listened to it 5 times!!

"I'm delighted to call you with wonderful news. The final pathology came back, and they got everything. There is no evidence that [the cancer] has gone anywhere, it's clean as a whistle... Congratulations, this is great news!"

I'm hoping this means I will not need chemotherapy or radiation. I still might need hormone therapy to help prevent the cancer from coming back, since my cancer was ER+ and PR+. The nurse said she's off-site today so I'll call her tomorrow to ask about next steps.

Hooray!!

8/24/19: (1 Day Post-DMX) I'm Home

Warning: This post includes a photo of my surgical drains.

I had one overnight visit from the nurse to attend to my IV antibiotics, but otherwise I slept alright.

A doctor checked in with me in the morning. He didn't examine me, just talked to us about what to expect as I recover from surgery.

Both the day and overnight nurses were more forthcoming in recommending the oxycodone, talking about being "free from pain". One of the nurses said that being pain-free would allow me to move around more, and being mobile is important to recovery. But on a scale of 1-10, I feel like I range from 2-4. And it isn't quite so much pain, as it is a kind of achy feeling. It's tolerable, and it isn't keeping me from getting up and walking around. When I got discharged, they gave me a printed prescription for oxycodone to fill as needed, but in the meantime, I think the Tylenol is sufficient.

Before I got discharged, the nurse gave me some cold packs to apply to painful areas as needed over the next couple days.

She also gave us two specimen cups and showed us how to empty and measure my drains. The fluid collected is expected to lessen each day, and at some point the drains will come out.

Prior to my surgery, one of my cousins gave me a wonderfully thoughtful gift, including a couple mastectomy shirts. I changed into a mastectomy shirt to wear home, but it turned out I didn't need the inside drain pockets because the drains are safety pinned to small loops on a compression band that's wrapped around my chest.

Still, the mastectomy shirt is a life saver. I do not own any other short-sleeve, loose-fitting, button-down shirts! Without this mastectomy shirt, I would have resorted to an old oversized long-sleeve button-down shirt, which would not have been nearly as comfortable. The mastectomy shirt has the added bonus of having snap buttons, which is much easier to manage in my current limited capacity. I think it will be a while before I can wear anything besides this mastectomy shirt!

For the drive home, I needed to cushion my chest from the pressure of the seat belt. I had brought a small pillow, but found it was much more fun to use the soft squishy dragon that my friends gave me just prior to surgery.

We were home in time for lunch, and I was happy to enjoy a bowl of Taiwanese beef noodle soup that my dad had made for me in advance. (Protein is supposed to be good for wound healing.)

I'm following advice and drinking lots of water! Which means I'm also peeing a lot.

Mostly I feel fine, just my arms make me feel like a T-Rex. I can move my arms freely from the elbows down, but anything involving the movement of my upper arms causes soreness in my chest. 

8/23/19: Double Mastectomy (DMX) Surgery

Here's a recap of my surgery experience. All the gory details!

First off, I feel fine! The pain is much less than I anticipated, so I am grateful for that. I assume there are lots of factors that are making my recovery easier than what I had expected as the worst case scenario. I did not have reconstruction (immediate reconstruction entails additional surgery); I did not have chemotherapy prior to surgery; I don't smoke (smoking ages skin prematurely, which can make for more difficult recovery); and I'm well below the median age of breast cancer patients (62), so maybe I have fewer health issues in general.

The night before surgery, my nerves got the better of me. I was up around 2:30 AM, and couldn't fall back asleep. I took my shower with Hibiclens, took 2 Tylenol before leaving the house as instructed, and we arrived at the hospital at 6:30 AM as scheduled.

I have to say, I really feel I got high quality care at the hospital. Everyone was competent and compassionate.

Ken came in with me to the pre-op area. I gave a urine sample. A pre-op nurse took my vitals and asked me lots of questions. Two anesthesiologists came by, and one put an IV into the back of my left hand for the general anesthesia. The IV in my hand felt kind of weird, it took getting used to.

Throughout the process, I was asked multiple times to confirm my name and the procedure I would be undergoing, in my own words. It turns out, it was not enough to say, "double/bilateral mastectomy"; it was important that I also state "bilateral sentinel lymph node biopsy".

I changed into a hospital gown, and they took me in a wheelchair down to the Breast Center for my nuclear medicine appointment. Ken stayed behind because much of the Breast Center is a women-only area. I met with a nuclear medicine person and a radiologist. I'm pretty sure the radiologist was the one who performed my first ultrasound, but she showed no signs of recognizing me. The two of them together decided where to inject me with the blue radioactive dye that would show the path from my breasts to the sentinel lymph nodes, which would be removed for biopsy. I got 6 injections in each breast. That's 12 injections total! Ouch. 4 injections on each side went into the breast tissue. The remaining 2 on each side were subcutaneous, and hurt a bit more.

I was brought back to the pre-op area. We met with the breast surgeon, and I really have to say, he just filled me with confidence with his calm, professional, and reassuring demeanor. I confirmed with him one last time that I was sure I did not want reconstruction, I wanted to be flat, with no excess skin; I wanted non-skin-sparing surgery.

The anesthesiologists came back around and gave me two injections in my back for a nerve block (regional anesthesia) that would numb my whole chest area.

Then it was time.

I said goodbye to Ken, and teared up. One of the nurses pushing my hospital bed talked to me with calm, compassionate, and reassuring words. I stared up at the hospital ceiling, holding back the tears, while they pushed me around corners and down halls to the operating room. I was moved onto the operating table, and they must have administered the general anesthesia via the IV around that time. I remember counting 5 people busily working around me, and that's it.

The next thing I knew, I was waking up, and it was done.

I went into surgery at 9:45 AM as scheduled. I'm told I came out at 1:10 PM, so that's just about 3 1/2 hours in surgery. I woke up around 1:30 PM. They called Ken to come to the post-op area.

The nurse told me the breast surgeon was "really happy" with the results. The breast surgeon came by and said everything had gone smoothly. I think I was still pretty out of it.

The post-op nurse talked to me about pain management, and she used the words "tolerable pain". I appreciated her perspective, because I was apprehensive about taking addictive narcotics. She said we could start with the lowest possible doses and ramp up only if necessary. She did recommend that I take oxycodone when the block anesthesia was expected to wear off, which would happen in about 8-10 hours after it was administered.

I really had to pee, so two nurses helped me up and walked me to the restroom. My post-op nurse warned me that because of the blue dye, my pee would be green! And so it was. I made a mental note to tell my son, who I knew would get a kick out of that.

I was moved to my room around 2:45 PM. They put leg compression wraps on both my calves to help prevent blood clots. The wraps automatically compressed each leg alternatingly. It felt great, like I was getting a constant leg massage. (I would periodically take them off when my legs felt too warm.)

Any time a nurse took my vitals, the blood pressure cuff was placed around my leg calf instead of my arm. I think this was to prevent lymphedema (swelling in the arms) after lymph node removal. I will need to ask the surgeon during my follow-up visit if I will always need to have blood pressure measured from my leg, or can it be measured in my arm after I'm fully healed?

At 6:00 PM I took 5 mg of oxycodone. The nurses regularly gave me 1000 mg of Tylenol on schedule, every 8 hours. I also got antibiotics via the IV, a shot in the belly of blood thinner (also to help prevent blood clots), and Colace and Senna to help with bowel movement.

Ken went home in the late afternoon to pick up the kids and bring them to the hospital. They visited for about an hour, and then Ken brought them back home. He had dinner with them, and then the kids stayed home with Ken's mom while Ken came back to spend the night with me in the hospital, in a reclining chair in my room.

It was a long, emotional day. I am glad to have the procedure behind me, and am happy to focus on recovery. I am not quite as relieved as I thought I would be, because I am still anxious about the pathology results.

I will get a call on Monday to schedule a follow-up appointment with the breast surgeon.

8/19/19: Phone Call + Email

Hm. I know people are only human, and tasks can sometimes fall through the cracks. My surgery on Friday is like the Main Event for me, but of course I'm just one of many, many patients in the hospital.

I'm just trying to manage my anxiety. Right now it's not bad, and I'd like to keep it that way!

On the pre-operative phone call last week, the nurse said she would send me an email with complete instructions. I didn't get the email on Friday, so I called the hospital this morning. The nurse who answered the phone sent me the email immediately and had me confirm receipt while on the phone.

Interestingly, contrary to what the nurse said on the phone, the printed instructions clearly state, "Do not shave near where you will have surgery. Shaving with a razor can irritate your skin and make it easier to develop an infection."

The email also does not include full instructions for how to use Hibiclens. In fact, it says, "Hibiclens solution and instructions for how to use it will be given to you at your pre-admission visit." But I don't have a pre-admission appointment. So I found these instructions posted by the Memorial Sloan Kettering Cancer Center. And it sounds like I can buy it myself at a pharmacy.

Edited to add: I was able to buy Hibiclens at my local CVS. I don't have the receipt so I can't remember what I paid exactly, but CVS.com lists the price as $13.49.

Total cost to date: $18,100.71
With insurance, cost to me: $890.56‬

8/16/19: Pre-Operative Phone Appointment

As instructed by the letter with surgery information, I called the hospital this morning for a pre-operative interview.

Mostly the nurse asked me a lot of questions related to my medical history.

She also gave me some pre-operative instructions, some of which were listed on the letter I already received, but some which weren't.

No eating or drinking anything, not even hard candy or water, after midnight the night before my surgery.

To get a jump on pain management, I should take two 500 mg Tylenol tablets before leaving the house on the morning of the surgery. It's okay to have a sip of water with those pills. I should not take Advil before or after the surgery. (Something about an increase risk of bleeding.)

I'm supposed to take a shower the night before and the morning of using a special antiseptic soap called Hibiclens. The letter I received hadn't mentioned showering at all. The nurse on the phone said she'd email me additional instructions including information about the special soap.

On one of the Facebook groups I joined, there was a whole thread about whether or not it's okay to shave before surgery. Some women are instructed not to shave for a number of days beforehand. I asked about this, and the nurse said it's okay to shave, just be careful not to nick myself, especially in the underarm area, which is close to the surgery site. Well, since shaving nicks are accidents, and I can't very well ensure that I won't nick myself unintentionally, I'm just going to err on the side of caution and not shave the week before, just in case.

It's a little hard to believe that one week from now, I will be in the operating room.

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 per day 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!

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.

6/20/19: The Nurse Called Me with Appointments and Receptor Results

While we were at the genetic counseling appointment, the nurse called and left a message. I called her back and was able to speak with her.

She said she spoke with my NP and had some information for me.

First, I got an appointment with the plastic surgeon. Unfortunately, it conflicted with the appointment with the breast surgeon, so she was trying to see if my breast surgeon appointment could be changed. I told her the NP had said I could always decide about breast reconstruction later, and that I'm not sure yet how I feel about breast reconstruction, so right now I am more concerned about meeting with the breast surgeon as soon as possible. I wouldn't mind delaying the appointment with the plastic surgeon. The nurse agreed to keep my breast surgeon appointment as scheduled, she would cancel the plastic surgeon appointment, and look to re-schedule the plastic surgeon for a later date.

Second, I got an appointment for the MRI with biopsy. The date is about 1 1/2 weeks after my appointment with the breast surgeon, so we won't have the biopsy results in time for the breast surgeon appointment. I am wondering how soon we could schedule the surgery... Having both genetic testing and MRI biopsy results before the surgery would be ideal. But I'm also wondering if, after all this anxiety and stress, would I rather just get the double mastectomy no matter what, and save myself the future trouble of having to worry about cancer in my left breast? I need to think about this. The NP had said we can cancel the MRI with biopsy if I opt for the double mastectomy regardless of test results. 

Third, they got partial receptor testing results. I am positive for both estrogen and progesterone receptors. This is good news. This means hormone therapy drugs could be used in my treatment. (I can't help but think how my many years of taking birth control pills may have affected the breast cancer growth... I took a combination birth control pill that contained estrogen and progestin, a synthetic form of progesterone.) They are still waiting on the HER2 testing results.

The nurse said the first step right now is surgery. Then I would meet with a medical oncologist, who would handle my treatment after surgery. 

6/20/19: Mammogram and Ultrasound - Inconclusive + NP Appointment

Today's appointment was scheduled because the MRI showed "something" in the left breast.

I thought they were going to do an ultrasound of my right breast, too, but they didn't. Maybe there's no need to look any further now that it's clear the right breast will be removed anyway.

In the waiting room, I was asked to fill out the standard mammogram paperwork again. This time, my answers included my recent MRI, biopsy, and breast cancer diagnosis. My NP popped in and said I could ask to speak with her at any time during my visit.

First, I got a diagnostic mammogram of my left breast.

Next, the ultrasound of my left breast. When the ultrasound technician left to show the images to the radiologist, the nurse who was at my biopsy came in. She was so comforting, I couldn't help a few tears from slipping out.

The technician and the radiologist returned. The radiologist was the same doctor who performed my biopsy. She said the technician didn't see anything in the ultrasound. She repeated the ultrasound herself to confirm the same.

So, neither the mammogram nor the ultrasound could explain what the MRI showed. The radiologist recommended an MRI-guided biopsy for my left breast, and also genetic testing. Before leaving, she gave me a kind, sympathetic, "I'm sorry you're going through this" kind of look.

At this point, my appointment was technically over, but I asked if I could speak with my NP.

I held it together until my NP walked into the examining room. She handed me some tissues and reassured me my reaction was normal. 

She said she is still in the process of making the appointment with the plastic surgeon.

She will make my appointment for the MRI with biopsy. That appointment would have to take place in the city. These appointments are typically made about 2 weeks in advance.

She will put in a referral for urgent genetic testing. They will call me to set up an appointment. 

She said genetic testing results typically take about a week. Even if the results aren't available in time for next Friday's appointment with the breast surgeon, we should still keep that appointment. 

We will proceed assuming both the biopsy and genetic testing are negative.

If the biopsy comes back as cancer, or if the genetic testing shows I carry genes linked to breast cancer, the surgeon would likely recommend bilateral surgery - a double mastectomy.

The NP said that even if both tests are negative, I should still think about whether or not I want to get both breasts removed. For some women, preserving natural breast tissue is very important. For others, reducing the anxiety of cancer recurrence is more important. If I decide to get a double mastectomy for preventative reasons, she would cancel the MRI biopsy, as the results would be irrelevant if the left breast is going to removed anyway.

I asked if there is any chance of recurrence if both breasts are removed? She said the goal is to remove all the breast tissue, but sometimes it's not possible, so there is a small 1-3% chance of recurrence even after a double mastectomy.

And how would I be screened for cancer, if there are no breasts to image? She said I would have regular clinical visits with her, the NP, and she would perform physical exams to feel for lumps. (I didn't think to ask, but will add to my list: Would breast reconstruction surgery affect the ability to palpably detect new lumps?)

Regarding breast reconstruction surgery, she said I don't need to decide that now. I can always choose to have it done at a later date. It was something of a relief to have one less thing to worry about right now.

To aid her in setting up my appointments, I had previously given her my summer vacation schedule. I told her to disregard them. I don't want to delay treatment.

6/14/19: The Nurse Called Me

The next day, the nurse who accompanied me during the biopsy called me to check in.

This time, I missed the call because I had gone for a walk. I called her back and left a message thanking her for her call and saying I was doing fine.

She had sent me home with two instant cold packs. I had used them both the evening before, as instructed, even though I didn't feel any pain.

I removed the band-aids and realized that the extraction locations were "below" the lumps, not directly adjacent to them, but on the underside of my breast. Over the weekend, the areas would become bruised, but they didn't hurt. I didn't feel much discomfort at all, except for some itchiness around the band-aids and steri-strips.

6/13/19: Biopsy

I arrived early for my appointment, and had a pleasant exchange with another woman entering the Breast Center.

After changing into a hospital gown from the waist up, the first step was the ultrasound. I lay on my back with my right arm positioned over my head. The ultrasound technician looked at both locations without saying much. I asked her if she was able to get a look at the second lump. She said it was difficult to distinguish between the lump and the nipple, but she was able to see it.

We waited for a nurse to arrive. To my surprise, the nurse was the woman I had met walking in. She stayed with me for the rest of my appointment, her supportive bedside manner keeping me calm.

Meanwhile, the ultrasound technician had left, presumably to confer with the radiologist. When they returned, I was relieved to hear the radiologist say she would attempt to biopsy both locations. She said she wasn't sure if she could get samples from the second location, but she would try. (I have to say, this radiologist was so much more personable than the other two I had seen previously.)

As the radiologist came and went to prepare for the biopsy, the nurse explained that after the tissue samples were taken, the radiologist would insert a tiny titanium "clip" into each site, so each location would be easily identifiable for future reference.

The radiologist explained the biopsy procedure. A shot of Novocaine would provide local anesthesia. After that, I should only be able to feel slight pressure, no pain. The ultrasound would help guide the position of a "core needle," which would extract the breast tissue. I didn't dare look at the instrument for fear of getting queasy. Each extraction would be accompanied by a loud "click" sound, which the radiologist demonstrated so I would know what to expect. Finally, she told me that I should expect bruising afterwards.

The ceiling above me was designed and lit to look like a skylight through which I could see blue skies, wisps of white clouds, and colorful tree tops. I kept my eyes on this calming image while the ultrasound technician and the radiologist got to work on the first location, with the nurse standing by. The Novocaine shot pinched a bit, but then I didn't feel a thing when the radiologist extracted 5 samples.

The second location near the nipple was more difficult, and the radiologist had said she would try to get at least 2 samples. With the "click" of the first extraction, I flinched. I could actually feel it. It wasn't painful, but also not painless like the extractions from the first location. The radiologist checked with me to make sure I was okay, and then continued. She was able to get I think 4 or 5 samples from the second location as well.

Just as the radiologist finished with the second location, I felt a flow of blood run from the middle of my right breast down the outside of my torso. Yikes. The radiologist quickly put pressure on the area, then the nurse took over. I lay with the nurse putting pressure on the second location for quite a while before the location was covered with steri-strips and a band-aid.

With the biopsy finished, and the titanium clips inserted, the ultrasound technician took some more ultrasound pictures. As a final step, I would also need to get a "soft" mammogram of my right breast, meaning a mammogram in which the breast is gently positioned, but not squeezed.

Before taking her leave, the radiologist mentioned that I should come back for another ultrasound for my left breast, because the MRI showed "something" in the left breast, too. (To date, all diagnostic mammograms and ultrasounds were only on my right breast, where the two lumps are located.) This was the first time I had heard anything about my left breast, and to be honest, the idea that I had to come back yet again for yet another test was overwhelming.

The nurse had me sit up slowly in stages, first with my feet still on the table, and then with my feet hanging over the side. Just as the nurse asked me if I was ready for the mammogram, I started to feel queasy. Then I felt very warm, and a little foggy. The nurse had the mammogram technician get me some water and Teddy Grahams, then some ginger ale and saltines. After a while, the feeling passed. The nurse said "hot flashes" are a common reaction to Novocaine, and apparently I got a lot of Novocaine.

Once I was feeling better, the nurse gave me written instructions for how to handle the biopsy recovery. She said she would call me the next day to check in, and she would call again in 3-5 days with the biopsy results.

Then I went with the mammogram technician to get the "soft" mammogram.

Lastly, the mammogram technician left me briefly, and then came back with my appointment date and time for another ultrasound. They would look at both breasts, presumably just a follow-up for the right breast. She mentioned the idea of doing the ultrasound the same day, but then said everybody thought I had been through enough, and it would be better to come back another day.