My New Life Norm
Apr. 10th, 2024 05:40 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
trickykittyI haven't posted this here, mostly because it's been easier to copy/paste from test results into Facebook and text messages than to actually type out a lot of stuff here. However, I still kind of want to document more concretely my experiences.
Everyone asks this first, so putting this at the top:
So far there are no indications of cancer in the lymph nodes per imaging. As of right now, given the size and relative containment my cancer is Stage 1. If microscopic examination of lymph nodes after surgery show any cancer or it turns out to be bigger than imaging suggests, then the cancer will be bumped up to Stage 2. But so far, Stage 1.
NOTE: There are multiple numbers that all all mean something different. High BIRADS just means hurry up and confirm if cancerous, and high Nottingham just means the cancer is much more different than usual breast cells surround it, but neither inform the Cancer Stage, as that is determined by size and level of spreading.
I'm 47 and I hadn't had a screening mammogram every year since turning 40 like I should.
Last April I pointed out a mass to my gynecologist who said he didn't think it was anything, but let's go ahead and schedule a mammogram to be sure. He was nonchalant about it, but that might just be his way of trying to keep his patient calm until official results come in. He's the one person on this planet who has actually known me longer than my parents, as he was also my mom's OB/GYN and he delivered me while my mom was sedated. (They thought they would have to do a cesarean, but when they knocked her out her muscles relaxed, and I just popped on out without issue.) Unfortunately, I was so overwhelmed by work I kept putting it off, telling myself I'll schedule it tomorrow/next week/etc. Next thing I know, it's November and he's mailed out a letter announcing his retirement at the end of December 2023. Crap. Now I have to find a new gynecologist.
I knew the mammogram referral would be technically void if the receiving office called to verify it, so I decided after the holidays and new year I would either try to schedule for a new gynecologist or just have my PCP send a referral. January hit and so did a new development. My breast was showing signs of a skin divot near the lump spot. I called the PCP immediately for a referral and scheduled the screening mammogram for Jan 27. When I arrived, the technician asked if I had any concerns, and I mentioned the lump. She did a basic physical exam and said, nope, we're bypassing the screening, which takes 3-5 weeks to get results and going straight to diagnostic mammogram plus ultrasound, in which the radiologist looks at the images immediately and you walk away with a (preliminary) diagnosis.
I had three different ladies all looking at schedules for multiple locations in the county. The soonest they could find for me was Friday, March 1, which ironically is the first day of Women's History Month, so I got to celebrate the only way a woman truly should, by getting her boobs squished and imaged. I did the mammogram, sat in my changing room while the radiologist looked at them and asked for additional images, and so I went back in for some more squishing. Once she was satisfied with those images we went into the ultrasound room and completed that. The radiologist then came in to discuss the results with me. From the time I went back until the time I emerged to retrieve my mom, who had come with me but decided to wait in the main waiting room, it was slightly less than an hour. The insta-result was BIRADS-5, highly suggestive of malignancy, recommend ultrasound core biopsy. They do the ultrasound immediately to determine if ultrasound-guided biopsy is possible (they have to be able to see it on the ultrasound) or if I would need to go to the much more difficult MRI-guided biopsy. Considering I could feel the lump, I knew they would be able to see it on ultrasound. The imaging center didn't do the biopsy themselves, so I was told I would get a call either Friday afternoon or Monday to schedule the biopsy.
Vanessa, my Breast Care Navigator (think Boob Concierge), called Monday morning, and there was an opening for Thursday afternoon. She called back Monday afternoon and said the ultrasound tech was willing to come in right when they open at 7am the next morning if I could be there when they unlock the doors. That's how quickly they wanted to get me in.
Tuesday, March 5, I was at the Virginia Clay Dorman Breast Care Center at Texas Health Southwest at 6:50am and was brought in right at 7am. There were the ultrasound technician, an assisting nurse, and the doctor performing the biopsy who was dressed for a dinner party in a nice form-fitting burgundy dress and didn't bother with a smock or coat. I imagine that's her normal dress, but I'll know for sure next week (see below). They numbed the incision spot and boob area for biopsy, although I got lucky and the needle went just slight past the numb area inside and I started wincing a little in pain. The doctor was talking procedure to me the entire time without more than 2 seconds of non-verbal space, which is great and encourages the patient to be just as forthcoming about how she feels. Luckily the needle acts as both a snipping vacuum and has a second port for sending in in meds, so they stopped briefly to wait for more numbing lidocaine to seep in and work and didn't continue until I concurred. This meant they only had to insert the big needle once and would be able to pull multiple samples as well as numb as needed instead of multiple jabs through the skin. The procedure was probably only a couple minutes long at most, definitely not more than 5. Vanessa met me afterward, provided aftercare instructions and ice packs, and handed me a half-inch Breast Cancer Treatment Handbook as a parting gift.
Random pain and bruising ensued for the rest of the week, but the pain was gone by the weekend and the bruising eventually dissipated. The next step for me was to select a surgeon. I already had a surgeon that had previously handled my grandmother's breast cancer as well as a couple issues my mom has had and that my mom had referred me to for my underarm hidradenitis suppurativa surgery a few years back. I like her, but she is a little older, and considering my gynecologist just retired, I really didn't want a surgeon that might not be around much longer in that same respect. I looked over the two recommended surgeons provided by the Breast Center and picked Dr. Cynara Coomer, especially after reading her bio and watching her video.
Biopsy results for the curious:
- Invasive ductal carcinoma (IDC) [which is 75% of all breast cancers, so highly researched]
- Histologic grade: Nottingham grade 3 (tubule formation-3, mitotic activity-2, nuclear pleomorphism-3; total score-8) [which just tells about the current state of the cancer itself, not my cancer stage]
- Greatest dimension of invasive carcinoma in the biopsy: At least 3.7 mm [which is kind of medium sized (less than 2mm is small and greater than 5mm is large)]
- Estrogen Receptor (ER) Status: Positive (>95%; strong intensity) [good - cancer will respond to ER treatments]
- Progesterone Receptor (PgR) Status: Positive (>95%; strong intensity) [good - cancer will respond to PR treatments]
- HER2 by immunohistochemistry: Negative (Score 1+) [mostly good, as HER2 usually indicates high growth factor, which we don't want, but does mean the cancer will not respond to HER2 treatments]
[ER/PR + and HER2 - is actually the best outcome for those 3 markers. The worst is triple-negative, where none of the potential treatments will work.]
- Ki-67: 22-25% of cells with nuclear positivity [2-3% means essentially non-growth and would be optimum, and >30% means out-of-hand growth, so mine is growing at a stead pace which means we have a little more wiggle room with timing, but not much]
The first (of many) surgical consults was Wednesday, March 13, and again my mom attended with me. Dr. Coomer did a thorough physical exam after looking over my test results. She ordered more tests as is typical for my situation: MRI, blood DNA for cancer markers (my own genetic makers), and Oncotype for the cancer's markers to see if it will respond to chemotherapy or not. They can now test the latter and stop putting some patients through the chemo when it would otherwise do no good. We scheduled the follow-up for 4 weeks later (April 10) to give time for the new test results, with the Oncotype taking the longest apparently. She reassured me that with the Ki-67 results and my own description of growth, the timing was okay and the tests would be more informative than without.
The MRI was Thursday, March 21. Breast MRI is the only one in which the patient lays on their stomach, since breathing causes the breasts to move up and down too much to get good images when lying on the back. So the girls get to hang down freely while I pretend I'm lying on a massage table at a loud concert. I got headphones and requested classic rock via the Pandora options, and the first song was "We Will Rock You" by Queen, and I loved it. The technician put the stent in my arm, got me into the MRI for the without-contrast scan, pushed the contrast through, then ran the scan with contrast. Apparently a lot of folks think the with contrast will come first, so she makes a point now of saying it's in the opposite order up front while putting in the stent, and I questioned how many people don't understand order of operations and would think contrast scan comes first. I can't recall when I was saying stuff prior to the exam, but when I arrived she asked me if I had a medical background, because I talked like I did. Oh, I love being a smart person sometimes.
Friday, April 5, at around 2pm, I got a call from Vanessa to discuss my MRI results, which I'd already received online a few days earlier, but tried to ignore what I read. I was holding out for the April 10th appointment for letting emotions kick in. She informed me of what I already knew, which was two more small, potentially cancerous spots were located near enough to main cancer that they recommend more biopsies. She wanted to schedule me for Monday morning, which I had already taken PTO for the total solar eclipse, and at first I was okay with it. But as we talked, my emotions were all over the place, and I became resigned that I will not do a lumpectomy but as mastectomy instead, so what would be the point of additional testing when someone else could take that spot that might be where I was a month ago with my first biopsy. The decision had me in tears, and I talked with my boss and made her cry as well and then I opted to work from home for the rest of the day.
Friday afternoon and evening I was so distraught. I came home, tried to do a little extra work, then logged out of work and started reading the next chapter in the Breast Cancer book, which was all about the differences between lumpectomy and mastectomy, lymph node testing, and all other surgery things. The book had a worksheet in the back (it has LOTS of worksheets) that help you determine your own mindset regarding the lumpectomy versus mastectomy question if you have lumpectomy as an option. I went through the one page questionnaire and realized that I really did still want to try for lumpectomy and highly regretted my decision to not have the additional biopsy. I'm aware that that's probably why the decision I made during the phone call upset me so much, given my underlying cognitive dissonance. I left a message for Vanessa to see if the Monday appointment was still available. Monday morning I received a call back and the appointment time was already taken and the next available time would be the next Monday, April 15. We got that scheduled and have moved back the follow-up with Dr. Coomer to Wednesday, April 17.
So, that's where I'm at now in hurry-up-and-wait mode. Monday will be the 2nd mammogram and 3rd ultrasound and hopefully the 2nd biopsy (again, they have to be able to locate the spots to avoid having to do an MRI-guided biopsy), and then surgery consult next Wednesday. I'm also still awaiting the results of the Oncotype test to find out if chemo "is right for me."
Everyone asks this first, so putting this at the top:
So far there are no indications of cancer in the lymph nodes per imaging. As of right now, given the size and relative containment my cancer is Stage 1. If microscopic examination of lymph nodes after surgery show any cancer or it turns out to be bigger than imaging suggests, then the cancer will be bumped up to Stage 2. But so far, Stage 1.
NOTE: There are multiple numbers that all all mean something different. High BIRADS just means hurry up and confirm if cancerous, and high Nottingham just means the cancer is much more different than usual breast cells surround it, but neither inform the Cancer Stage, as that is determined by size and level of spreading.
I'm 47 and I hadn't had a screening mammogram every year since turning 40 like I should.
Last April I pointed out a mass to my gynecologist who said he didn't think it was anything, but let's go ahead and schedule a mammogram to be sure. He was nonchalant about it, but that might just be his way of trying to keep his patient calm until official results come in. He's the one person on this planet who has actually known me longer than my parents, as he was also my mom's OB/GYN and he delivered me while my mom was sedated. (They thought they would have to do a cesarean, but when they knocked her out her muscles relaxed, and I just popped on out without issue.) Unfortunately, I was so overwhelmed by work I kept putting it off, telling myself I'll schedule it tomorrow/next week/etc. Next thing I know, it's November and he's mailed out a letter announcing his retirement at the end of December 2023. Crap. Now I have to find a new gynecologist.
I knew the mammogram referral would be technically void if the receiving office called to verify it, so I decided after the holidays and new year I would either try to schedule for a new gynecologist or just have my PCP send a referral. January hit and so did a new development. My breast was showing signs of a skin divot near the lump spot. I called the PCP immediately for a referral and scheduled the screening mammogram for Jan 27. When I arrived, the technician asked if I had any concerns, and I mentioned the lump. She did a basic physical exam and said, nope, we're bypassing the screening, which takes 3-5 weeks to get results and going straight to diagnostic mammogram plus ultrasound, in which the radiologist looks at the images immediately and you walk away with a (preliminary) diagnosis.
I had three different ladies all looking at schedules for multiple locations in the county. The soonest they could find for me was Friday, March 1, which ironically is the first day of Women's History Month, so I got to celebrate the only way a woman truly should, by getting her boobs squished and imaged. I did the mammogram, sat in my changing room while the radiologist looked at them and asked for additional images, and so I went back in for some more squishing. Once she was satisfied with those images we went into the ultrasound room and completed that. The radiologist then came in to discuss the results with me. From the time I went back until the time I emerged to retrieve my mom, who had come with me but decided to wait in the main waiting room, it was slightly less than an hour. The insta-result was BIRADS-5, highly suggestive of malignancy, recommend ultrasound core biopsy. They do the ultrasound immediately to determine if ultrasound-guided biopsy is possible (they have to be able to see it on the ultrasound) or if I would need to go to the much more difficult MRI-guided biopsy. Considering I could feel the lump, I knew they would be able to see it on ultrasound. The imaging center didn't do the biopsy themselves, so I was told I would get a call either Friday afternoon or Monday to schedule the biopsy.
Vanessa, my Breast Care Navigator (think Boob Concierge), called Monday morning, and there was an opening for Thursday afternoon. She called back Monday afternoon and said the ultrasound tech was willing to come in right when they open at 7am the next morning if I could be there when they unlock the doors. That's how quickly they wanted to get me in.
Tuesday, March 5, I was at the Virginia Clay Dorman Breast Care Center at Texas Health Southwest at 6:50am and was brought in right at 7am. There were the ultrasound technician, an assisting nurse, and the doctor performing the biopsy who was dressed for a dinner party in a nice form-fitting burgundy dress and didn't bother with a smock or coat. I imagine that's her normal dress, but I'll know for sure next week (see below). They numbed the incision spot and boob area for biopsy, although I got lucky and the needle went just slight past the numb area inside and I started wincing a little in pain. The doctor was talking procedure to me the entire time without more than 2 seconds of non-verbal space, which is great and encourages the patient to be just as forthcoming about how she feels. Luckily the needle acts as both a snipping vacuum and has a second port for sending in in meds, so they stopped briefly to wait for more numbing lidocaine to seep in and work and didn't continue until I concurred. This meant they only had to insert the big needle once and would be able to pull multiple samples as well as numb as needed instead of multiple jabs through the skin. The procedure was probably only a couple minutes long at most, definitely not more than 5. Vanessa met me afterward, provided aftercare instructions and ice packs, and handed me a half-inch Breast Cancer Treatment Handbook as a parting gift.
Random pain and bruising ensued for the rest of the week, but the pain was gone by the weekend and the bruising eventually dissipated. The next step for me was to select a surgeon. I already had a surgeon that had previously handled my grandmother's breast cancer as well as a couple issues my mom has had and that my mom had referred me to for my underarm hidradenitis suppurativa surgery a few years back. I like her, but she is a little older, and considering my gynecologist just retired, I really didn't want a surgeon that might not be around much longer in that same respect. I looked over the two recommended surgeons provided by the Breast Center and picked Dr. Cynara Coomer, especially after reading her bio and watching her video.
Biopsy results for the curious:
- Invasive ductal carcinoma (IDC) [which is 75% of all breast cancers, so highly researched]
- Histologic grade: Nottingham grade 3 (tubule formation-3, mitotic activity-2, nuclear pleomorphism-3; total score-8) [which just tells about the current state of the cancer itself, not my cancer stage]
- Greatest dimension of invasive carcinoma in the biopsy: At least 3.7 mm [which is kind of medium sized (less than 2mm is small and greater than 5mm is large)]
- Estrogen Receptor (ER) Status: Positive (>95%; strong intensity) [good - cancer will respond to ER treatments]
- Progesterone Receptor (PgR) Status: Positive (>95%; strong intensity) [good - cancer will respond to PR treatments]
- HER2 by immunohistochemistry: Negative (Score 1+) [mostly good, as HER2 usually indicates high growth factor, which we don't want, but does mean the cancer will not respond to HER2 treatments]
[ER/PR + and HER2 - is actually the best outcome for those 3 markers. The worst is triple-negative, where none of the potential treatments will work.]
- Ki-67: 22-25% of cells with nuclear positivity [2-3% means essentially non-growth and would be optimum, and >30% means out-of-hand growth, so mine is growing at a stead pace which means we have a little more wiggle room with timing, but not much]
The first (of many) surgical consults was Wednesday, March 13, and again my mom attended with me. Dr. Coomer did a thorough physical exam after looking over my test results. She ordered more tests as is typical for my situation: MRI, blood DNA for cancer markers (my own genetic makers), and Oncotype for the cancer's markers to see if it will respond to chemotherapy or not. They can now test the latter and stop putting some patients through the chemo when it would otherwise do no good. We scheduled the follow-up for 4 weeks later (April 10) to give time for the new test results, with the Oncotype taking the longest apparently. She reassured me that with the Ki-67 results and my own description of growth, the timing was okay and the tests would be more informative than without.
The MRI was Thursday, March 21. Breast MRI is the only one in which the patient lays on their stomach, since breathing causes the breasts to move up and down too much to get good images when lying on the back. So the girls get to hang down freely while I pretend I'm lying on a massage table at a loud concert. I got headphones and requested classic rock via the Pandora options, and the first song was "We Will Rock You" by Queen, and I loved it. The technician put the stent in my arm, got me into the MRI for the without-contrast scan, pushed the contrast through, then ran the scan with contrast. Apparently a lot of folks think the with contrast will come first, so she makes a point now of saying it's in the opposite order up front while putting in the stent, and I questioned how many people don't understand order of operations and would think contrast scan comes first. I can't recall when I was saying stuff prior to the exam, but when I arrived she asked me if I had a medical background, because I talked like I did. Oh, I love being a smart person sometimes.
Friday, April 5, at around 2pm, I got a call from Vanessa to discuss my MRI results, which I'd already received online a few days earlier, but tried to ignore what I read. I was holding out for the April 10th appointment for letting emotions kick in. She informed me of what I already knew, which was two more small, potentially cancerous spots were located near enough to main cancer that they recommend more biopsies. She wanted to schedule me for Monday morning, which I had already taken PTO for the total solar eclipse, and at first I was okay with it. But as we talked, my emotions were all over the place, and I became resigned that I will not do a lumpectomy but as mastectomy instead, so what would be the point of additional testing when someone else could take that spot that might be where I was a month ago with my first biopsy. The decision had me in tears, and I talked with my boss and made her cry as well and then I opted to work from home for the rest of the day.
Friday afternoon and evening I was so distraught. I came home, tried to do a little extra work, then logged out of work and started reading the next chapter in the Breast Cancer book, which was all about the differences between lumpectomy and mastectomy, lymph node testing, and all other surgery things. The book had a worksheet in the back (it has LOTS of worksheets) that help you determine your own mindset regarding the lumpectomy versus mastectomy question if you have lumpectomy as an option. I went through the one page questionnaire and realized that I really did still want to try for lumpectomy and highly regretted my decision to not have the additional biopsy. I'm aware that that's probably why the decision I made during the phone call upset me so much, given my underlying cognitive dissonance. I left a message for Vanessa to see if the Monday appointment was still available. Monday morning I received a call back and the appointment time was already taken and the next available time would be the next Monday, April 15. We got that scheduled and have moved back the follow-up with Dr. Coomer to Wednesday, April 17.
So, that's where I'm at now in hurry-up-and-wait mode. Monday will be the 2nd mammogram and 3rd ultrasound and hopefully the 2nd biopsy (again, they have to be able to locate the spots to avoid having to do an MRI-guided biopsy), and then surgery consult next Wednesday. I'm also still awaiting the results of the Oncotype test to find out if chemo "is right for me."
