January 23rd 2023 at 12:03 p.m. my life changed forever.
This is the exact date and time that I found out I have Breast Cancer.
My life since that date has been non-stop appointments and waiting. Very overwhelming.
I will be writing about my experience, the good, the bad, and the ugly.
The short version now is…
I have Invasive Ductal Carcinoma Stage 1A HER2+ ER+ PR+
This was caught during my routine mammogram. The good news is it was caught early, the bad news is I’m HER2+ which is very aggressive and requires Chemo, Targeted Therapy, and Hormonal Therapy.
I opted for a double mastectomy that took place February 28th. I’m slowly recovering so I can get Chemo.
I start 6 rounds of Chemo & Targeted Therapy April 6th that will be every 3 weeks. After that I have a year of Targeted Therapy every 3 weeks. Once I complete that I start 10 years of Hormonal Therapy.
It’s been a lot to take in and mange. Jeff has been my angel and superhero all in one. He has made spreadsheets for my meds, set alarms to wake me up so I can take my pills, cleaning the house, doing the laundry, going to the grocery store, driving me to a bazillion appointments, and working from home. He’s been truly amazing.
If you’re interested in following along on my journey, come back and see what’s going on. I have a lot to say about this experience so far, and it’s just begun.
Let’s rewind a little and give a brief description of treatments for Breast Cancer
Depending on stage, and type of Breast Cancer, any, or all of these can be part of the protocol. In my case, I’m Stage 1A, Grade 2, Triple Positive, no lymph node involvement. With my diagnosis even though I’m Stage 1A (Stage 1 describes a very early stage of invasive cancer. At this point, tumor cells have spread to normal surrounding breast tissue but are still contained in a small area. The A means that the tumor is less than 2.0 cm and has not spread to the lymph nodes) I’m also Triple positive. This means I am HER2+, ER+, & PR+. It’s aggressive and it feeds off hormones.
My treatment plan called for:
I marked the calendar with potential dates for everything (nothing is set in stone because of possible complications) and started looking at the task in front of me. Once I received my last chemo, it wasn’t over until 3 weeks later. I had three weeks of side effects to deal with. I’m not going to lie, it felt good walking into the cancer center on June 29th without my Paxman Cold Capping Kit know that I was only getting targeted therapy and not chemo too. My body needed to start recovering without getting knocked back down every 3 weeks.
At my first appointment for targeted therapy only, there was a lot to discuss. We decided on the aromatase inhibitor that I would be taking for the next 10 years. Letrozole was the winner. There are 3 different medications to choose from. It’s basically Coke, Pepsi, or RC, pick one and see how your body handles it. If your body can’t handle it, try the next. The aromatase inhibitor is for post-menopausal women, pre-menopausal women take Tamoxafen. If my body can’t handle any of the three aromatase inhibitors, then I can take Tamoxafen, but it is slightly less effective. This is to keep estrogen out of my body. Lucky me, I’m going to be thrown right back into menopause, as if the first round wasn’t fun enough!
From what I have been told and read, the key to handling these drugs is to eat properly and exercise regularly. I’ve been nervous about starting it because I have been limited in my exercise because of the side effects from the chemo. It can take up to a full year before your body fully recovers from chemo.
Another issue for me right now is my resting heart rate is still on the high side for me and not coming back down as quickly as it had between chemo’s. My normal runs between 68 and 72. Right now it’s 84 but was up to 89 for many days. When I stand up from the couch, it jumps to 110 – 124. It’s really taking its toll on me, and I continue to stress about it, which is not helping. I will have my 3-month echocardiogram this month so the doctor can compare it to my baseline and see if there is any heart damage. Now I get to include a cardiologist in my list of doctors.
The targeted therapy that I am receiving is called Phesgo. It contains Herceptin and Perjeta. It can be given intravenously or via injection. Fortunately, I am getting the injections. The first is a timed 8-minute shot and the remaining 16 are 5 minutes. This is a very important part of my treatment. Here is a link to a succinct article on what it is.
https://www.breastcenter.com/2020/03/04/a-brief-history-of-herceptin-and-the-her2-cancer-gene/
I will be going into the cancer center every three weeks, if all tests and labs are good, to get an injection. If all goes as planned and I don’t have to take any breaks to let my heart recover, I will be done with this portion of the treatment in early March 2024. That will be considered the end of ‘active’ treatment, even though I will technically be in treatment for another 10 years with hormone therapy. That is the day I will bang that gong!
If you want more info on the Herceptin story, rent the movie, Living Proof starring Harry Connick Jr. It’s truly inspiring and has an unbelievable cast.
Left the house at 7:25 am for Chemo 4 Day. First stop was the Hearing/Balance Testing. Well, my balance took a little bit of a hit from Chemo 3. Hearing stayed the same. After that, it was off to get some blood work done and then wait to see the doctor. This is usually about a 5- or 10-minute wait after the bloodwork. It was at least 30 minutes. I was starting to worry because I knew a decision was going to be made on whether to continue with Chemo 5 & 6. Jeff and I laughed that he was meeting with all the other doctors trying to figure out what to do with me. Got to keep the laughter going.
Finally, we were in the room. Blood pressure was slightly elevated for me, Jeff laughed. Then we sat and waited some more. The doctor finally came in and apologized for his lateness. He runs the place and is an important guy, who am I to complain? If he was treating an emergency, I’d want him to do the same for me if I was the emergency.
I had my list of side effects and then a list of questions if this was my final chemo. We went through the side effects and talked them through, but his mind was made up. 4 and done with Chemo, today would be my last one. Mind you, my treatments continue, but the worst of the treatments will be behind me, or so I think. He went on to say that my cancer was caught early with no node involvement, and I’ve been communicating everything to him. He smiled and said, “4 is enough and I’m good with it”.
Next, I went through my list of questions. And we worked through all of them. The important ones were getting a Dexa scan scheduled prior to starting the Aromatase Inhibitor. A Dexa scan is a bone density scan that uses low dose X-rays to see how dense (or strong) your bones are. Bone density scans are often used to diagnose or assess your risk of osteoporosis, a health condition that weakens bones and makes them more likely to break. The AI (Aromatase Inhibitor) is brutal on your bones so they need a baseline to compare against to see if I will need medications to help with bone loss.
Next up, choosing which of the 3 AI’s to put me one. It’s Coke, Pepsi, or RC. We went through them and decided on Letrozole (don’t look it up, the side effects are like watching medication commercials on tv). All three have lovely side effects, all of them affect the bones. I will try the Letrozole for a couple of months, to see how the side effects hit me and if they are tolerable. If not, we try another. Key is going to be exercise to keep the joints moving so I have to get this dizziness under control.
The good news, I will be deported in 2 months! Yes, they will surgically remove the port that is under my skin. This thing is a pain since it sticks out and I scratch it at night by mistake, but I’m so glad I had it for all my Chemo session, truly a life saver. Back to blood draws without it.
Those were the three big questions, but I had one more that I needed a date for. I asked the doctor, “When can I go visit my boyfriend in Texas?” Dead silence. I said, “Before you answer that, let me tell you about him. He’s 6’ 2” tall, very handsome, has freckles, and an 18 pack.” So finally the doc looks at me and says, “Texas, why Texas?” I laughed and asked him, “Really, that’s what you focus on with my husband of 35 years sitting next to me?” He scratched his head and said, “Uh, I was trying to ignore the other part.” I quickly showed him a picture of Roofus, he's a red kangaroo, and he was shocked. The next picture was Jeff feeding Roofus a bottle, “See, Jeff’s ok with it, they are friends and he’ll be visiting him with me this trip.” I think I’m going to be a topic at his dinner table tonight.
Finally, I was able to give Dr. Firozvi and his assistant a small thank you for getting me through Chemo. I made custom wrappers for full size Hershey Bars for the Doctors, Nurses, and staff. Dr. F surprised me when he asked if he could have someone from his office consult with me on ideas for patients. I was flattered.
After leaving the room, I went to hand out the bars to the staff since I didn’t know in advance if this was my last Chemo. Everyone loved them and even more so when they realized they were customized. My Chemo nurse was so excited she went through the entire floor showing it off and pointing to us. It wasn’t a lot, but it was from the heart.
The rest of the day was status quo for Chemo Day except it was longer because of the earlier wait. We didn’t get home until 4:35 pm. I didn’t not Bang the Gong (My cancer center has a gong instead of a bell which kind of makes me smile, more my style!) because Chemo is not the end of my active treatment. I still have 14 Phesgo shots to go. So, March or April I will be banging that Gong with Jeff, Zak, and hopefully I can get Alex & and Alex to fly up for it too.
Next up will be a little info and history on Phesgo, it’s actually very interesting.
YAY YOU!!!!! 👏🏼👏🏼🩷🩷🩷🩷
Keep kicking this cancer’s ass!!
I cannot wait to see the Roofus reunion pictures!!!
All sounds positive! Your hair looks cute like that but I may be a little biased! 🌸
Went in for Chemo 2 on April 27th. My numbers were good, and balance and hearing tests were good, so I was approved for treatment. It’s a long day, but Jeff and I know what to expect now and have discovered a routine. Treatment went fine and we were homeward bound, to deal with side effects for the next 3 weeks.
This round did me in. I started with no-stop diarrhea. I was so dizzy and so fatigued. Unfortunately, it never really got better. The dizziness and fatigued lasted almost the entire 3 weeks. It got slightly better the last couple of days, but I was still not back to being myself. I was VERY concerned about my balance testing. I truly knew in my heart that it was going to show a clinically significant change.
I was right.
My balance showed significant clinical change and there was a slight change to my hearing. I went for my blood draw and then waited to see the doctor.
My doctor walked in and immediately said, “You don’t look so good.” He wasn’t wrong. We discussed all that I had gone through in the last 3 weeks and the balance and hearing results. Then he said, “I’m not sure what to do with you.” He knew I was going to be a challenge because of my low White Blood Cell count but throw in the dizziness and neuropathy and I was the triple whammy.
When I met with him for the 1st time on February 3rd, he said protocol was 4 to 6 cycles, but he wanted to try to get 6 in me if my body could handle it. My mind was focused on 6 cycles. We went back and forth discussing all options and finally decided on reducing my Carboplatin to 90% this cycle to see if that helped with the dizziness. He also said he was leaning towards 4 cycles instead of 6. He told me, “This is where I treat the patient and not the statistics. Quality of life is a big part of decision making”. He went on to say, “Giving you 6 cycles was bringing a bazooka to a bb gun fight. I like to be overly aggressive if the patient can handle it with HER2+”.
I asked him if he was comfortable with 4 vs. 6 cycles, and he responded, “VERY”.
The decision will be made at my next appointment on June 8th.
I’m currently 2 weeks post chemo 3 and made the turn, over the weekend. This round has been better, still not fun, but better. Over the weekend I developed a bright red, flaky rash all over my face. All I do is moisturize every hour. Food for over 10 days tasted like concrete dipped in sand. Protein shakes are getting old! It’s always something with these side effects.
Summer is coming, and Laurie will be avoiding the sun. It’s going to be a very long hot summer for me, but my skin is extra sensitive to sunlight right now. I sat on the patio with leggings on and after a half an hour, I developed red weblike marks all over my legs from the sun, through the leggings.
Right now, since I’m somewhat able to think straight, I’m researching the Aromatase Inhibitors (hormone therapy). There are 3 to choose from and it’s all about the side effects. All of them include joint and bone pain and weaken your bones. Bone scans will become a routine part of my testing soon. It’s basically a roll of the dice. Most women go through at least one or two before finding one they can live with. I will be starting on these 3 weeks after my last chemo. I still have 14 more targeted therapy shots to go that will be given every 3 weeks too.
One of my concerns with the AI (Aromatase Inhibitor) is keeping my body moving. Exercise is a huge factor in adapting to them. If I’m dizzy and can’t even go for walks, I’m going to have a hard time with them, and I will be on them for the next 10 years. This is where quality of life comes to play.
I’m trying to do all that I can to get ready for the next phase in my treatment and remain upbeat. There are days that are very defeating though and I’m so thankful I have Jeff Kapugi to lift me up. He’s truly been my biggest cheerleader and at my side every step of the way. Breast Cancer is a full-time job and exhausting. Everywhere you turn there are reminders, reminders of things you can’t do, food tastes awful, and those medication commercials for metastatic breast cancer seem to be every other commercial, ugh.
Next up will be Chemo 4 or another topic I’m thinking about addressing.
Yes, writing about your experience teaches you what you know, and the rest of us are finding out by reading what you are learning---the hard way, Laurie. My hope for you is a job well done for healing and a gradual return to your wonderful nature photography. A virtual hug to Jeff.
First chemo side effects:
I’m lazy and have decided to cut and paste the document I put together for my oncologist.
4-7-23 Day 1
4-8-23 Day 2
4-9-23 Day 3
4-10-23 Day 4
4-11-23 Day 5
4-12-23 Day 6
4-13-23 Day 7
Overall I bounced back after a week, but was still very tired and light headed.
April 6, 2023 has arrived, it’s chemo #1 day. To say I was nervous is an understatement. Jeff and I decided that Thursdays would be a good day for chemo, he could work from home on Friday and be home for me through the weekend with the hopes I would be well enough by Monday for him to go back to the office. As nervous as I was, I must admit, whenever I’m at the cancer center, I just feel safe. Everyone there puts me at ease and answers all my questions. Even though you think it should be a sad place, it’s a place of hope for me.
We got checked in and were told to go to the infusion waiting room. Apparently, my doctor was stuck on an airplane, and they didn’t want to send me home, so my blood draw was taken by the chemo nurse. This wasn’t the normal routine. I forewarned the nurse that I run low WBC and she smiled as she left the room. She was working with the nurse practitioner to get me approved for treatment until my doctor was available.
My nurse came back in the room and said, “You weren’t kidding about the low WBC, you snuck in by the skin of your teeth.” Thank goodness I wasn’t turned away on my first chemo!
Next up we had to get my cold cap on. Because there is a 6% chance of permanent hair loss with one of the drugs, Jeff and I decided to invest in cold capping. Cold caps and scalp cooling systems are tightly fitting, strap-on, helmet-type hats filled with a gel coolant that’s chilled to between -15 to -40 degrees Fahrenheit and maintain the scalp temperature between 66- and 72-degrees Fahrenheit. With this system and the type of chemo I am on, I will have a 70% chance of keeping 50% of my hair. It also helps with regrowth and helps keep the hair follicles healthy. This is not something that insurance companies cover unfortunately. We decided it was worth the investment. Have you met me? I’d be in the 6%. I’m ok with being bald for 6 months or so, but not the rest of my life.
The cold cap is quite a process. First you spray your hair to make it damp and brush it away from your face. Conditioner is applied to the top of your hair, this is to prevent hairs from being pulled out when you remove the cap. Next the gel cap is put on. Now for the fun part, putting the neoprene cap on top of the gel cap and tightening it so there aren’t any gaps. This took some practice, but Jeff did a fantastic job. Once the chin strap was tightened, I was officially a chipmunk!
Because of the cold capping my treatment went from 2.5/3 hours to 4/4.5 hours. It requires an additional 90 minutes. I was very nervous about the cold capping. I had read that the first 15 minutes are like a brain freeze from drinking a Slurpee too fast. I came prepared with an eye mask so I could block out the light and just try to work through it. Surprisingly, this was not as bad as I thought it would be. The worst part for me was icing my toes and fingertips while they administered Docetaxel for an hour. Icing during Docetaxel is supposed to help prevent neuropathy in the fingers and toes. An hour of pain to try to avoid non-stop pain in the future, is worth it.
The first 30 minutes they give you premeds to help with side effects and during this time, the cold cap is cooling my head down. Once the cool down is where it needs to be they start infusing me with the drugs, one bag at a time. Since I have two caps on my head and no hearing aids, it’s hard to have conversations. Jeff sits on the uncomfortable chair while I recline in the comfy recliner with blankets on me. When the icing occurs, Jeff oversees keeping a steady supply of ice packs for me to hold and keep on my toes. They last around 20 minutes so he is busy during the Docetaxel portion. The rest of the time, the two of us watch reels or play games on our phones. The time really does go by quickly, except when I’m icing my fingers and toes!
The HP portion of my treatment is Herceptin/ Pertuzumab. This is the targeted therapy that I’m fortunate enough to have given via injection. The first one is administered in the thigh over 8 minutes. The next 17 are given over a 5 minute period. Once the 6 chemos are done, I will have to go in every three weeks for this injection (Phezgo). I was smart and did my research. I wanted to be comfortable and leggings are my go to. I wore bike shorts under the leggings to make this portion easier. The nurse was super thrilled that I didn’t have to go and change.
Once the 90 minute cooling down period is over, it’s time to carefully remove the caps, pack up, and head home to go to sleep! After removing the cap, I fully understand why they instruct you to put conditioner on your hair before putting the cap on. There were icicles in my hair and on the inner cap!
Next up…The days following Chemo.
My treatment is TCHP, Docetaxel + Carboplatin + Transtuzumab + Pertuzumab. The Docetaxel and Carboplatin are Chemo and the Transtuzumab & Perttuzumab are Targeted Therapy.
The biggest concerns for this protocol are:
There are many others that include vomiting, bone pain, joint pain, constipation, diarrhea, mouth sores, changes in taste, and the list goes on and on.
So, the hearing and balance issues are a big concern, since I already wear hearing aids. For those of you that don’t know, I was diagnosed with moderate to severe hearing loss in April of 2021 and started wearing hearing aids.
My oncologist sent me to an audiologist and a balance issue prior to starting chemo so he can have a base line for both. This involved 2.5 hours of testing. The hearing test was the same as my initial testing when I was diagnosed with hearing loss. Repeating words, listening to sounds etc. The balance only required me to balance on each foot two different ways. After that it involved headphones and looking at a tv screen on the side trying to keep the red line from coming on and many other similar types of tests.
Some interesting things came out of this test. They believe that I’ve had hearing loss my entire life and just got by. Apparently, the testing done in schools in the 70’s wasn’t as thorough as the current testing done by audiologists. I have had ringing in my ears for as long as I can remember, but it became much worse after a Florida Georgia Line concert years ago that I happened to be next to a speaker when they started sound checking. Tinnitus is real and it never goes away, the hearing aids help, but the ringing is always there. Chemo can make this much worse or even cause more hearing damage so that is why they are watching this so carefully.
The other fun thing that can happen is I can have balance issues for the rest of my life. It turns out the test showed that 2 of the 5 receptors in my right ear are non-responsive. I laughed and asked why I don’t fall down all the time. It turns out, the body is amazing and the left side has been compensating for the right. After going through my medical history, it was determined that these receptors were injured in 1984 when I was hit by the drunk driver. My left side has been working overtime since 1984, who knew! This is another thing they are very concerned about, I cannot afford to lose anymore receptors on the right side, so they will monitor very carefully.
Monitoring takes place prior to Chemo’s 2 through 6. The baseline was set prior to Chemo 1. Prior to Chemo 2 - 6 I will have to go to the audiologist/balance specialist for a ½ hour testing. The results are then forwarded to Dr. F. immediately. Then I go for my blood draw. Once all those numbers and results are evaluated by Dr. F. he determines if I can get the Chemo that day and if any adjustments to the dosages need to be made.
There’s so much more to getting treated for Breast Cancer than just getting Chemo.
Next up, Chemo #1, will my numbers allow me to get it on schedule?
Wow Laurie. I’ve been a nurse a long time but have never worked oncology. This is all a lot and your detailed experience is enlightening. I wish you continued strength & positivity.
Let’s just start with, Breast Cancer is hard work! I am absolutely amazed at how many moving parts there are when you have breast cancer. So many tests, so many doctors, so many appointments, so many details, so much research, so many supplies, so many medications, so many limitations, and the list goes on and on.
My recovery from the double mastectomy is going well so far. The limitation of not lifting more than 5 pounds and not doing housework is HARD for me. I am behaving, but it’s harder than you think. I live off Amazon right now, thank goodness they mark the weight of the package on the label so I know if I can pick it up or not. Most days, Jeff comes home and must bring the packages in the house, annoying for both of us. Everyone tells me to slow down and allow my body to recover. Easier said than done.
Let’s get another thing off my chest, no pun intended, breast expanders are uncomfortable 24/7. They have ridges, are thick, and very unattractive. The plan is to finish chemo, give my body some time to recover and then swap them out for the implants in September.
Do you see a trend here? I haven’t fully recovered from the surgery and it’s time to start chemo. Once I finish chemo, it’s targeted therapy and expander/implant swap. Your body is truly put through hell. I’m blessed that I don’t work full time, I’m not sure how women with small children and full-time jobs get through this.
I was sent for an ultrasound by Dr. K because the left expander is filling in an odd shape, lucky me! She was afraid I had a seroma, fluid buildup, behind the left expander. No seroma, which is a good thing, but it’s unsettling when two different doctors look at your Picasso chest quizzically. It appears I have scar tissue, which is normal, but it’s forcing the expander to take a weird shape. The worst of the scar tissue is from that wonder Stereotactic Core Biopsy. So, until I can swap the expanders out in September, I’m going to have crooked boobs. The good news, there’s no cancer in there anymore. Gotta look for the positives.
Gearing up for chemo is a daunting task. You research everything that could help with side effects, and trust me, the protocol I’m on has quite a few, but you don’t know how you will react, and which ones will hit you harder than others.
Next up, spin the wheel of side effects.
I continue to keep you in my thoughts and send healing vibes and virtual hugs. Lots of love too!
Just sending positive vibes for getting through your chemo rounds - you’re a strong woman and you’re going to kick cancer’s butt!
Once we got home around 10:15 p.m., the day of surgery, I went straight to bed. I slept through the night. Jeff set alarms to wake me up to take pill as prescribed (he’s an angel). The next morning was rough. Twice a day the 4 drains I had sprouting from my body had to be measured, drained, and cleaned. Jeff and I were a tag team and got into a good routine for the 10 days they were in.
About 5 days after surgery, I was in immense pain on my right side. Every time I sat up, I felt like I was getting stabbed with a knife under my right breast. Dr. K. thought it might be the drain tube, but we wouldn’t know until it was pulled. I named that tube, Freddy Krueger. Once Freddy was pulled, I had immediate relief.
Showering was quite a task. I had to wear an apron to hold the drains. Thank goodness I bought a shower chair. I was allowed to have water hit my back and flow over to my front but couldn’t have the water hit my chest directly. That first shower felt so good!
As for the expanders, they are awkward and uncomfortable. My chest looks like a Picasso painting during his cubism period. Not pretty. Saline is added every week to expand the expanders. At first, the expanders show through your skin almost square and shelf like. As the saline goes in, week after week, they start to look a little better. This process continues until you are happy with the size. Then they have to remain at least 3 months and you must be done with chemo before they can swap them out for the implants.
There are many different implants, saline, silicone, and gummies bear. I opted for the saline because I felt they were the safest for me. If they were to rupture, it’s saline that the body absorbs. With silicone if it ruptures, you need surgery immediately since silicone is now inside your body. With the silicone, MRI’s are usually required every year to look for leaks. I’m currently doing enough testing and want to make life easier once I’m on the other side of this. One draw back to the saline, is they are cold. This could be a good thing when they put me on hormone therapy and throw me back into menopause.
The drains were pulled after 10 days, and my disposition quickly improved.
One thing I did prior to surgery and I’m so grateful I did, was research things that would make life easier for Jeff and me. I started a Cancer Sucks List in Amazon and put things in I thought I needed. The community of women on www.breastcancer.org were so helpful. A mastectomy pillow, a padded seatbelt cover, shower seat, shower drain apron, snap front shirts that had pockets in side to hold the drains (these were life savers), and a rolling hospital table. The hospital table was my best purchase, I could not reach to the side, I needed everything in front of me, so this really made life much easier. Best $60 I spent! The list goes on and on, but the moral of the story is, do your research beforehand. If you think you need it, order it, Amazon was my go to as you can always return things.
Next up is living recovering from a double mastectomy and gearing up for chemo.
I notified on February 15th that my surgery was set for February 21st at 11:30 am. Had to go to the primary to have my pre-op lab work and EKG. I discussed with my primary I was concerned about chemo because I have a low white blood cell count (WBC) to begin with. She informed me that they will watch it carefully and have things they can do to help it out.
What I didn’t expect was to get a call the day before my surgery informing me it was cancelled because my WBC count was too low. They rescheduled the surgery for March 30th. That date was unacceptable to me, I had an invasive cancer growing in my body that needed to come out. The scheduler worked her magic, and I had a new surgery date of February 28th at 3 pm. She apologized for the 3 pm, since I would be fasting. I didn’t care at this point, let’s just get this cancer out of my body so we can get to the next step in the process.
That was a long week, but somehow, I made it through. I didn’t sleep much the night before, but sleep has always been a problem for my Type A personality. Walking into the hospital, I felt confident that I was prepared mentally and had all the supplies I would need for an easier recovery.
Not everyone is aware that I was diagnosed with moderate to severe hearing loss in April of 2021. I have been wearing hearing aids ever since. I was told not to wear them to the hospital. This had a negative effect on my check in experience. The intake nurse practically whispered and was not facing me. She was asking a lot of questions that I needed to answer and I couldn’t hear her. Jeff jumped in and repeated everything. She finally asked why I was getting so upset and I politely informed her I can’t hear her (for the 4th time), then she started screaming. Again, somehow, I made it through that experience.
Before they take you to surgery, just about every person in the operating room comes and asks you the same questions. Every time I thought I was done, someone else popped in. Finally, I was on my way to the operating room.
Dr. P. came right over and started rubbing my hand and we cracked some jokes. The next thing I knew I was in recovery in a lot of pain. Poor Jeff had to wait longer than anticipated because they had a tough time getting to wake up. Shout out to our friend, Eric, who came and sat with Jeff through the entire surgery. I’m so grateful for friends like him and his wife, Heidi.
I was being released that night. I found out about two weeks later that Jeff took one look and me and was like, “No way I’m taking her home like this.” Somehow I rallied, despite the rocking chair they put me in and then had a hell of a time getting me out of. Jeff went to get the car and I had a very nice gentleman push me in the wheelchair.
We were on our way home around 10:15p.m.
Next up, post-surgery realities. They ain’t pretty or fun!
You never know what you will do until you’re faced with the situation. In the past, I had always said that if I ever got Breast Cancer, I would have a double mastectomy. Now, never in my right mind did I think this would ever happen to me. Fast forward, I have a surgeon asking me if I wanted a lumpectomy, a single mastectomy, or a double mastectomy. Dr. P told me I didn’t have to make up my mind immediately and set up a video call to discuss my final decision.
This was actually a very easy decision for me once I heard HER2+ and what it was. I opted for the double mastectomy. Jeff felt the same way, but he would support whatever decision I made. Fortunately, I have a loving husband that respects the fact that my body is my body.
The decisions didn’t stop there though. Did I want a flat closure, immediate reconstruction, DIEP Flap reconstruction, or delayed reconstruction. If I opted for reconstruction, I would require a plastic surgeon. The DIEP flap is breast reconstruction uses your body's skin, fat, and blood vessels to recreate your breasts. This complex microsurgery procedure is also called autologous tissue reconstruction. I was not a candidate for this procedure because I didn’t have enough belly fat, I’ll take that as a win!
Time to talk to a plastic surgeon and get all the information.
We met with Dr. K. on February 6th. We discussed all of my options and she explained the immediate reconstruction process, which I was leaning towards. The short version is she works in tandem with Dr. P during my mastectomy. After Dr. P. removes the breast, Dr. K. puts an expander in that will slowly have saline added to it over the next couple of months to expand the skin. Mine was skin saving and I was fortunate enough that I was able to do nipple saving. Depending on where the cancer was found and other factors, this is not always an option.
Decisions made and delivered discussed with doctors.
Next up getting a surgery date and all the things I would have to do before I can get the surgery.
February 3rd I had an appointment with my General Surgeon, this is the surgeon that performs the mastectomy. She was also going to give me the results of my MRI with Contrast.
A little info on how I found my doctors. I researched our medical plan doctors through the night as soon as I was told I would need a general surgeon and an oncologist. Unfortunately, their website was having issues and I couldn’t access all the doctors. I contacted my doctor for referrals and was quickly given the name of two doctors. I made the appointment with the general surgeon, she was one that I had researched and liked.
Time to meet Dr. P, my general surgeon. I LOVED her, she was a straight shooter, pulled no punches, and gave me my options. The MRI showed that my cancer was still contained to the one spot and the lymph nodes were clean (this still had to be confirmed after surgery to be 100% sure though). This is where I learned about HER2+. She informed me that I was HER2+ and because of that I would require chemo, targeted therapy, and hormone therapy.
Wait a minute…I’m Stage 1A, that’s early and good news, yet I’m looking at surgery, 6 cycles of chemo, a year of targeted therapy, and 10 years of hormone therapy, and after all that there’s still a 30% chance of reoccurrence. My brain was taking it in, but it still didn’t make sense. Dr. P figured me out very quickly and knew that I needed to keep the ball rolling. She arranged for me to meet with the oncologist in an hour and a half. I might not like what I’m hearing, but Dr. P was definitely on my side and doing what she could to help me.
We met with my oncologist, Dr. F, for 40 minutes. He drew pictures on the light board explaining my diagnosis of HER2+, ER+, and PR+. Next is a brief synopsis of each to give you an idea of how it affects treatments.
HER2:
HER2 (human epidermal growth factor receptor 2) is a gene that can play a role in the development of breast cancer. Your pathology report will include information about the HER2 status of the cancer. Genes contain the recipes for the various proteins a cell needs to stay healthy and function normally. Some genes and the proteins they make can influence how a breast cancer behaves and how it might respond to a specific treatment. Cancer cells from a tissue sample can be tested to see which genes are normal and abnormal. The proteins they make can also be tested. The HER2 gene makes HER2 proteins (also sometimes referred to as HER2/neu proteins). HER2 proteins are receptors on breast cells. Normally, HER2 receptors help control how a healthy breast cell grows, divides, and repairs itself. But in about 10% to 20% of breast cancers, the HER2 gene doesn't work correctly and makes too many copies of itself (known as HER2 gene amplification). All these extra HER2 genes tell breast cells to make too many HER2 receptors (HER2 protein overexpression). This makes breast cells grow and divide in an uncontrolled way. Breast cancers with HER2 gene amplification or HER2 protein overexpression are called HER2-positive in the pathology report. HER2-positive breast cancers tend to grow faster and are more likely to spread and come back compared to HER2-negative breast cancers. But there are medicines specifically for HER2-positive breast cancers.
This information is provided by Breastcancer.org.
Hormone Receptors:
Estrogen and progesterone Your pathology report will include the results of a hormone receptor assay, a test that tells you whether or not the breast cancer cells have receptors for the hormones estrogen and progesterone. Hormone receptors are proteins — found in and on breast cells — that pick up signals from the hormones telling the cells to grow. A breast cancer is estrogen receptor-positive if it has receptors for estrogen. This suggests that the cancer cells, like normal breast cells, may receive signals from estrogen that tell the cells to grow. The cancer is progesterone receptor-positive if it has progesterone receptors. Again, this means that the cancer cells may receive signals from progesterone that tell them to grow. Roughly two out of every three breast cancers test positive for hormone receptors.
This information is provided by Breastcancer.org.
It was a lot to take in, but at least I knew what I needed to make decisions on and what the treatment was going to be. Exactly one month from my routine mammogram I had a diagnosis and doctors ready to get my cancer out and healthy again. One thing I’ve learned is you have to be your own best advocate and fight to get appointments and get to the next step. I complained to Dr. F. about the process, he listened to my time line and told me it was one of the fasted diagnosis’ he’s heard of. Some people take up to 5 months. You might not like the diagnosis, but the faster you get it, the better the outcome for you.
Jeff and I spent the weekend, cancelling vacation, talking about my options, and coming up with a game plan on how to handle the diagnosis. It’s funny how you just kick into overdrive and get things done, even though the circumstances are life changing.
Next up…The Decision
I was driving to the grocery store when I received the call I was anxiously waiting for. It was Dr. H with my pathology report. After confirming my name and date of birth, she went on to tell me; "It's not the results we were hoping for. At this point you have Stage 1 Invasive Ductal Carcinoma."
January 18th was my appointment for the Stereotactic Core Biopsy. Me being me, I had to know what I was walking into and needed to prepare myself. I Googled it and proceeded to look at picture, videos, explanations, etc.
I was driving to the grocery store when I received the call I was anxiously waiting for. It was Dr. H with my pathology report. After confirming my name and date of birth, she went on to tell me; "It's not the results we were hoping for. At this point you have Stage 1 Invasive Ductal Carcinoma."
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