Catching you up on the crazy past few days. I am writing this 3 days post op from my double mastectomy.
It’s post op day 3 so I’m still on pain meds and a muscle relaxer … hopefully I can write complete thoughts still!
My last post was about what diagnoses day was like – this time I would like to list and give everyone a sense of how slowly the treatment puzzle pieces feel they come together after diagnosis. I figured it would all happen quickly without a lot of discussion… I was wrong.
My first appointment was in middle March where I showed my OBGYN where I felt a lump, two weeks later I had a mammogram and ultrasound. The mammogram stated my breast tissue was too dense for diagnosis and the ultrasound told us that it most definitely not a cyst but that’s all they knew.
4/9/19 – stereo-static biopsy (14 of them) for further diagnosing
4/11/19 – diagnosis day as stated previously I knew the name of the cancer and that’s it. Invasive ductal carcinoma. The days after this felt like months waiting as results came back and plans were made.
4/15/19 – surgery consult with same surgeon as biopsy week prior. At that appointment all that he knew was the name of the cancer, that it was around 1.5 cm, and estrogen and progestin 90% positive (good news because there are direct drugs that target that). He said we would also need to know HER2 status to know about the whole treatment plan but it was up to me to go ahead and do a lumpectomy or wait for HER2. I chose to schedule the lumpectomy for 4/18/19. I wanted the cancer OUT.
4/16/19 – first oncologist appointment. This appointment was a lot more to handle than I thought it would be. I HATE needles (although I’m learning that I’m tougher than I thought with that stuff) and first thing that happened was drawing 6 vials of blood when I got back to the room. I then met the chemo oncologist as well as the nurse practitioner. They only knew what I had so far 4/15/19 but the oncologist prepped me for the mindset that my cancer would most likely be HER2 positive at my age so I would first need chemo prior to any surgery of removing the mass. He asked for permission to get another vial of blood to have my genetic tests run (included many many markers but ones most people know are BRCA1 BRCA2). We also called the general surgeon and cancelled my surgery for Thursday pending HER2 results.
Later that night around 6 PM I was informed that the HER2 status was negative but still hold off on surgery until we know more. Excited but confused, I waited. I was also waiting to schedule a MRI and a PET scan…
4/17/19 – I met the radiation oncologist. She didn’t even mention radiation but gave me packets of information if I needed it. She focused her time on going over breast cancer staging and explaining where mine fell thus far. It was an amazing day to hear currently we are thinking stage 1A and that my specific kind of cancer is 98% curable. She also spoke to me about making sure I visit a fertility clinic since I want to have babies and the hormone therapy and/or chemo could cause infertility for a period of time. She had her nurses call and push for my MRI and PET to be scheduled faster. She also taught us all about the difference in lumpectomy versus mastectomy and sentinel lymphnode removal. She stated she was also waiting for more imaging and genetic testing before formulating a game plan and for me to focus on what surgery I want to do when it was time for it.
4/22/19 MRI and PET scan day! I was very nervous (and hungry) for this appointment. I knew everyone “believed” the cancer hadn’t moved but we only had mammogram and ultrasound imaging at that point and I was so scared the MRI and PET would end up different. I was there for about 3 hours getting injections and sitting through the AMAZINGLY LOUD MRI and then PET. I received a call later in the day that they both came back clear minus the one mass. SUCH A RELIEF ?! I was thinking yessss! Surgery and I’m out of this ?!
4/23/19 I get a call that some of my genetic markers are back and that I am BRCA1 positive so now I have a HIGH recurrence rate risk, and also have a high risk of ovarian cancer. Treating aggressively would be necessary. This day is when we decided to do the double mastectomy with reconstruction. I read about BRCA 1 and everything else you could imagine the rest of that day. It was a rough one.
4/26/19 plastic surgery consult! I have nothing against people who have had or want plastic surgery, but I’m not your girl to sign up for it. I never in a million years thought I would get fake boobs but when your 28 and they are going to remove them, man I jumped on that option. We went through the different breast options and since I’m smaller there was no ability to do like a tummy tuck and then use the fat for boobs. The best choice for me would be tissue expanders. You should read about it! But basically they put in deflated implants during surgery and over the next two months I’ll go to outpatient office and have saline added until they look like I want them too. Then I’ll have an outpatient procedure at the end to switch out these implants with new ones with exactly the right cc of volume.
The wait then started for surgery to be scheduled – not that fun of a wait! I was originally told it may be as late as the week of the 20th of May…. I’m thinking GET IT OUT OF ME!
5/1/19 – started the day with fertility clinic to talk about what we can do hopefully persevere my fertility. We discussed everything from Lupron injections to freezing eggs and embryos. Then it was off to last consult appointments with plastic surgery and general surgery and then a couple more hours at preop for bloodwork and filling out papers!
5/2/19 – SURGERY DAY!!!!!! I was a 2:15 pm surgery so I was HANGRY but i did it. Had radioactive dye injected around 11 am so the surgeon would be able to see the sentinel lymphnode. I was surrounded by family and friends all day. I felt so loved and the lymphnode was negative for cancer.!!
I’ll get into how post op is going as well as write a blog for some of the items my sister got me for the surgery that have been amazing!
Until next time – I’ll be recovering and continuing to beat cancer while raising money for others. Here’s the link if you want it!
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